It’s Your Own Fault

Its-Your-Own-Fault-Illness-Pain

Have you ever heard the words, “Well, what do you expect?” when someone learns that a person is living with illness or pain caused by an injury from their job or hobby. Maybe that person’s job was full of risk, such as working in a gold mine as highlighted on the Discovery Channel’s show Gold Rush, or on a crab boat similar to Deadliest Catch.

Maybe they played sports and received multiple concussions and are impacted by the long-term effects or repeated head injuries. Former Colorado Avalanche hockey player Scott Parker knows this firsthand. According to Adrian Dater, a reporter for The Denver Post:

Scott Parker lies in bed, dreading what might come next. Soon after awakening, his ears ring so loud they seem like the equivalent of 100 fire alarms. Waves of nausea wash over him until he vomits. His eyes glaze over.

One of the toughest men to ever play in the NHL is knocked out, not from an opponent’s punch, but from simply getting out of bed.

Nearly six years since he retired from the NHL as one of its toughest enforcers, Parker is finding everyday life a more fearsome opponent than any he dropped the gloves against. Some days he feels fine. Many days he finds himself paying the price of years of blows to his head. The 6-foot-6, 245-pound Parker — nicknamed “The Sheriff” as a player — frequently is debilitated by seizures. He has to wear sunglasses most of the time because too much light can bring on headaches that leave him incapacitated. When Parker looks down, he cannot “track” objects. Otherwise, he gets dizzy and nauseous.

Or maybe it’s working as a stuntwoman, such as Leslie Hoffman, who noted:

As a stuntwoman, I expected to get bumps and bruises, much like any other physical career (i.e. football players, hockey players, etc.) I also have had explosions go off near me or actually had small explosions put on my body to make it appear as if I had been shot, much like our soldiers.

Little did I know, whether the director wanted me to hit my head, like the dead cook in Clue, or I made a slight miscalculation on my part and ending up hitting my head, that I would end up with PCS (Post-Concussion Syndrome), TBI (Traumatic Brain Injury) and PTSD (Post-Traumatic Stress Disorder).

When people are injured doing high risk jobs and we find they are suffering from injuries sustained as a result of those jobs, we have a tendency to not have compassion for them because “it’s their own fault.” Furthermore, because of the invisible nature of their illness, we often do not believe them. If we do actually believe them, we either blame them causing them shame or dismiss their issues altogether.

Yet, if we know the apparent cause of illness and injury, do we show compassion and care? Or do we turn away and let these individuals fend for themselves? Most people do not take on risky jobs with the intent of becoming permanently injured and disabled. They use all kinds of safety measures and equipment to lessen the risk of injury.

What about the risk of driving a car? I think of those who were injured due to vehicle crashes, such as Dr. Margaret Ferrante and Hannah Andrusky, or from a rock climbing accident such as Angela Pierce. If they were at fault for causing the accident, would we look differently at them and dismiss their injuries just like those who participate in risky jobs and hobbies?

We may believe someone more if there appears to be an obvious reason for their illness or pain. Imagine the lack of belief when a cause of a person’s illness can’t be determined.

In a court of law, people who are charged with a crime are supposed to be afforded the opportunity to be proven guilty. The prosecutor, jury and judge determine their guilt based upon facts beyond a reasonable doubt. If there is reasonable doubt, lack of evidence or no eyewitness testimony, the accused is allowed to remain innocent and go free. Even though the evidence may appear to point to guilt, it must be proven by experts in the law and not by armchair quarterbacks such as us.

This brings up a question in regards to the disability and illness community. Why do people who live with illness, pain and disability and whose symptoms are invisible tend to be looked upon as guilty of faking or lying about their situation? It seems that they are guilty until proven innocent. Although doctors have already determined their condition by spending time with the patient and putting them through tests, we still often believe we know better.

Sometimes our loved one who is suffering has yet to be diagnosed and, in this case, we think, “Well, if a doctor can’t figure it out, then maybe the person really is faking.” Yet, even doctors admit that many patients have complicated cases and a diagnosis may take years and even decades to determine. During this time, the person living with the pain and illness daily continues on in misery while having their symptoms dismissed by friends and family.

Are we all really such experts in accessible parking laws that we can make judgments whether the person parking there has the right to do so? Are we aware of the legal forms and medical proof needed to obtain a placard or accessible license plate, not to mention the shame of having people stare and even yell at you for parking in a space for which you have the right?

What if we see someone in a store with a service dog? Are our first thoughts or words out of our mouths, “Hey, I wish I could bring my dog with me everywhere, too” or “No pets allowed”? A service dog is an assistive device just like a cane or wheelchair and allows the person to function in society with some sense of normality. We have no idea how a person’s life is benefitted by a service dog or all of the amazing services the animal may perform, such as helping with balance, fetching dropped items and alerting to possible seizures or sudden drops in blood glucose levels.

It is time to let our loved one know that we believe him or her when they say they are in pain or have a disability, even though we do not see it with our own eyes. They are the eyewitnesses living every moment in a body wracked with pain and illness. They need to know we love them. We need to take their word when they state they can or cannot do something. We need to ask them how we can help, versus thinking we are their doctor, lawyer or other disability expert, or even them. We should not ignore them or dismiss them even when their actions might have played a part in their injury or disability.

“I’m not really afraid. I just want to get some answers,” Scott Parker said. “For me to have to explain the symptoms to people, they don’t know. I sometimes say, ‘Let me give you 20-plus concussions and then we can talk.’ You just want someone to believe in you, for someone to say, ‘You’re not going crazy, it’s not you.’ They haven’t pinpointed what’s wrong. It’s not conclusive.”

Let’s not be judge and jury and condemn those in pain and suffering to loneliness and isolation, but be their friend, comforter, champion and caregiver. Most people do not ask to be ill and in pain; it is thrust upon them and it is very real. Others may be guilty of participating in risky jobs and hobbies, yet their pain and suffering is also real. Let’s treat them all the same way by helping them to become invisible no more.

This article was first published on Disability.Blog, by Disability.Gov on January 13, 2014.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

You’re So Needy

You're So Needy - Illness and Pain“You could get better if you wanted to.” “You should just try harder.” “You’re being lazy.” “You need to be more motivated.” “You’re so needy.”

Have you ever heard any of these comments from friends and family members? Have you ever said one of these to someone living with illness or pain? Often when we come across someone who says he has been sick or in pain for a long time, we think he is either exaggerating or not doing something about it. After all, when most people get sick, they get some rest, take some medication and are soon back on their feet. So why can’t our loved ones do that, too?

What we usually do not realize is how much people do attempt to regain their health. They have seen many doctors, had tons of tests, tried lots of medications and have undergone an unknown number of procedures. Yet, as we all well know, doctors do not always have all the answers. In fact, as our modern medicine improves, chronic illness actually rises. Excellent medical care saves lives and thereby, increases the rate of chronic illness.

Many times, we view those living with pain and illness as if their situation is due to a lack of motivation or attitude. They ask for help and we think they need to help themselves. We tell them if they “would just try harder,” have a “better attitude” and use “mind over matter,” they would not be suffering. Suffering can come upon us suddenly or gradually over time. Sometimes the cause is never known or found. Yet, the way people are judged and mistrusted can sometimes have just as devastating an impact on the sufferer as the actual pain or illness.

Quite often, the healthiness or appearance of fitness can add even more disbelief to the situation, especially if you are the strongest man in the world or at least play one on screen. As the star of the popular television show, “Hercules: The Legendary Journeys,” Kevin Sorbo portrayed an invincible demigod. He relished living the part—putting in 14-hour days on set, doing his own stunts and relentlessly working out at the gym. Until one day, it all came to an abrupt end.

Kevin, IDA’s 2013 Inspiration Honors Award recipient, shared in his book, True Strength – My Journey from Hercules to Mere Mortal—and How Nearly Dying Saved My Life, what viewers didn’t know – he suffered three strokes from an aneurysm in his shoulder that had been radiating blood clots throughout his body, likely for months. He was left partially blind and entirely incapacitated at just 38 years old.

“Every time I told someone my story, it was hard. (Doing so is uncomfortable to this day, but I have discovered it is also therapeutic.) People’s incredulous reactions always made me feel more helpless. Even the professionals, who hid their initial surprise and approached treatment with positive words and a great attitude, could not disguise their uncertainty at treating a young person for an old guy’s disease.”

We should never treat our loved ones as if they have chosen to have this condition and quit taking part in the activities they enjoy and miss. This approach is incredibly misconstrued, because why would they choose to give up the things they love? Most of all, why would we tell someone debilitated by his illness, “You just don’t want to work,” “You just don’t want to go out for dinner” or “You just don’t want to play with your children,” when he wants those things for himself more than we could possibly want those things for him. The truth is, if we look a little closer, we might see that our friend or family member is fighting this illness every step of the way, with courage most of us may never experience.

IDA 2013 Corporate Honors Award recipient and co-founder of RE/MAX, Dave Liniger, has done more adventurous things in his life than almost anybody I know. He served in Vietnam, is an avid pilot, has raced in NASCAR, has sky dived and even tried to circle the globe in a balloon. Yet in 2012, it was not an adrenaline activity that almost took his life, but a staph infection. Dave, who was always a strong leader, became the one who was most in need of others. Even from the onset of the illness, he was having a tough time asking for help. Dave shared his experience in his book, My Next Step: An Extraordinary Journey of Healing and Hope.

“I’m the kind of man who rarely, if ever, asks for help. In my mind, real men don’t need a hand from anyone—ever. In fact, I rather despised the thought of being dependent on someone else, so for me to suggest that I might be in need was actually a very big deal. I just had a gut feeling that something bad was about to happen.”

Yet, Dave did understand that people asking for help were not needy but in need. Thirty years ago, Dave’s wife, and then fiancé, Gail was recovering from her injuries sustained in a plane crash. “Even though I’d adhered to the ‘leave no man behind’ philosophy since I was in the military, this was the seminal moment when I vowed to myself that it would be my policy for life. No one deserves to be alone when they are sick, helpless and unable to care for themselves.”

Dave is in recovery from his illness, and I believe he has learned that sometimes no matter how strong you may think you are, there are times when you need others. I like to say that there are times when you need someone to carry the other end of the board. Or maybe even carry you.

In the midst of our busyness, especially during the holidays, let’s remember those who live with illness, pain or disability. We may have a friend, family member, someone at church, at work or a neighbor. Often those living with a debilitating condition are isolated and feel lonely or forgotten. There are many, simple ways we can show our love that does not take much of our time. So, let’s show them they are important to us by sharing our love with them throughout the year!

Although our schedules can get crazy, we can prioritize and even give up a few things that really aren’t that necessary. We can remember them with a card, a surprise gift in the mail, a phone call, bring them a meal or arrange a visit. We can also offer rides to doctor appointments or ask what they need from the grocery store. We can make a point to invite them to join us for a holiday dinner or party. What a gift it would be to be included! They need us. And we need them, too. Together, we can shine a little light in a dark time in their lives. Let’s all envision a world where people living with illness, pain and disability will be Invisible No More!

This article was first published on Disability.Blog, by Disability.Gov on November 14, 2013.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

My Thoughts on Sharing Your Illness with Others

Alanna-Wong-Invisible-Disabilities

Alanna Wong

Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.

People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.

By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?

I also believe that talking about your illness can help with the healing process. There is so much freedom in telling the truth. You no longer have to hide or pretend. And by opening up, you also reach out to others who may be going through a similar experience, and that helps you realize that you’re not alone. The more you share, the more you inspire others to do the same. And when you heal together, you heal faster. Chronic illness can make a sufferer feel alienated, but when we share our experiences with the illness, we open up new connections with others just like ourselves, and we don’t feel so alone anymore. Knowing that we are not alone is such a comforting feeling and it can definitely help the one struggling get through a difficult period. When you share, you are also helping yourself release bottled-up emotions like anger, frustration and fear. I’ve personally found that, the more I share and talk about my condition, the less of an effect it has on me.

Sharing your story is also a great way to spread awareness. Awareness, I believe, is what leads to acceptance. When there is no acceptance, there is very little support and people tend to get left behind. Opening up about your illness can help change this. The more awareness about your condition, the less isolated you will feel. And who knows, you might even inspire others to get the help they need. With acknowledgement comes acceptance.

About Alanna Wong

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website. Alanna is writing her KLS memoir. Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore). You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/

Truly Caring is Healthy

Truly-Caring-is-Healthy“Why did I decide to found the Invisible Disabilities® Association (IDA)?” This question has been posed to me on many occasions. The obvious answer is because of my wife, Sherri. As you may know, Sherri lives daily with progressive multiple sclerosis (MS), chronic Lyme disease, chemical injury and traumatic brain injury, as well as severe pain and bone crushing fatigue. I met Sherri in 1992 at the age of 28 after she was officially diagnosed with MS and Lyme disease. I fell in love not only with her, but also with helping other people who are living with invisible disabilities and pain every day. I wanted to be her champion and theirs, too.

But why care at all? Caring means being a part of someone else’s mess. Caring means moving from “it’s all about me” to “maybe, it is about you, too”. According to Google, the word “care” is both a noun that means “the provision of what is necessary for the health, welfare, maintenance and protection of someone or something,” and a verb that means to “feel concern or interest; attach importance to something.” I think that one shows he cares via kindness in both senses of the word.

Thus, what moved me to launch IDA was my desire to care for others. People who live with an invisible illness oftentimes become part of the shadows. They need, as the above definition states, “health, welfare, maintenance and protection,” because sometimes caring can be hard to come by. For example, my wife once collapsed at a department store and sat in the aisle for more than an hour as people just walked by. No one seemed concerned. Sound crazy? I hear these types of stories quite often.

How can caring impact a person’s health? A recent article in Wired Magazine by author Nathanael Johnson talks about the “Care Effect.”

During a research study led by Ted Kaptchuk at Harvard Medical School, patients with irritable bowel syndrome were told they would be participating in a study of the benefits of acupuncture. One group, which received the treatment from a warm, friendly researcher who asked detailed questions about their lives, did report a reduction in symptoms, equivalent to what might result from any drug on the market. Unbeknownst to them, the researchers used trick needles that didn’t pierce their skin. Now here’s the interesting part – the same sham treatment was given to another group of subjects, but performed brusquely, without conversation. The benefits largely disappeared. Kaptchuk concluded that it was the empathetic exchange between the practitioner and the patient that made the difference.

What Kaptchuk demonstrated is what some medical thinkers have begun to call the “care effect,” that is the idea that the opportunity for patients to feel heard and cared for can improve their health. Kaptchuk’s study was a breakthrough. It showed that randomized, controlled trials could measure the effect of caring. However, there was already abundant evidence from nursing science to suggest a healing power in the interaction between practitioner and patient. A study in Turkey found that empathetic nurses improved the symptoms of patients with hypertension. Midwestern cancer patients who received massages slept better and had less pain.

I have had many discussions with nurses and I asked why they decided to pursue nursing as a profession. Their answer is usually because they care about people, especially those who are sick and in pain. Caring for the invisible is one of the main reason’s both Karyn Buxman, RN, MSN, author of the What So Funny About… book series and Ali Garrett, RN, BSN, the nursing director at Roundup River Ranch joined the IDA team as board members. By showing kindness and care, I believe IDA helps contribute to the health of those we touch through encouragement, education and connection.

A recent blog by IDA’s 2013 Healthcare Honor’s Award recipient, Marlo Thomas, actress, author and national spokesperson for St. Jude Children’s Research Hospital, also sheds light on the health benefit of being kind and caring.

At first blush, stories of decency and goodness may seem trivial when compared to the constant stream of bad news that pours forth every day. But it’s just a matter of keeping perspective. For instance, would a story about a group of villagers in India banding together to save a baby elephant stop the poverty and injustices suffered by so many around the world? Of course, it wouldn’t. But it might keep us from throwing in the towel.

Or what about the fast-food employee from North Carolina who turned a young girl’s disastrous prom night into a dream date? That might not turn around the epidemic of bullying facing our youth today, but it goes a long way toward remembering that people are basically kind, and that we look out for each other.

And then there’s the New Hampshire college athlete who gave up his beloved sport — the shot put – in order to save the life of a complete stranger. That might not be the miracle cure for cancer that we’ve all been looking for, but it certainly sends a message that sometimes love and kindness are the most powerful medicines.

While we all should continue to take a deep breath and bear the harder and sadder stories that populate the front pages of our newspapers – and then, try to do something about them – let’s all remember to feed our spirits by seeking out stories about random acts of kindness, as well. Those stories are out there – sometimes you just have to dig a little to find them.

I hope the stories of kindness Marlo mentions are not so random. I think of Dave Dias, IDA 2011 Caregiver Honor’s Award recipient, who takes the time out of his busy schedule as an insurance executive to regularly blog about his wife, Irene, who struggles with illness and injury from a car accident years ago. Dave even took the time to write a book, Irene’s Journey of Faith. Dave is not alone in caring, yet we still have strides to go. I hope we can move from stories to caring becoming a way of life.

The Invisible Disabilities® Association’s mission revolves around care. We care by listening, believing, validating, encouraging, educating and connecting people touched by illness, pain and disability. We show we care by telling the world that people matter even in all of their illness and pain, even when they can barely get out of bed, even when they can’t speak for themselves and even when they must depend on others for their most basic needs.

I love the following quote from leadership guru, John Maxwell: “People don’t care how much you know until they know how much you care.” I care, and I founded IDA for this reason.  At IDA, we care and we believe. We look forward to a world where people living with illness, pain and disability will be Invisible No More®, a world where we all care and believe!

This article was first published on Disability.Blog, by Disability.Gov on August 14, 2013.

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Invisible Disabilities in the News with IDA Founder, Wayne Connell

IDA on Comcast Newsmakers

Comcast Newsmakers reporter, Beverly Weaver, interviews Invisible Disabilities Association Founder and President, Wayne Connell about invisible disabilities. This interview aired several times in September 2013.

It’s Not An Illusion! Debilitating illness and pain is real, even though we can’t always “see” it; and we need to believe in and love the people living with them.

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe.

 

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Mrs. Washington Contestant Understands Invisible Disabilities

Rosie Lohr, Mrs. Washington Contestant

Rosie Lohr, Mrs. Washington Contestant

Written by Rosie Lohr, Mrs. Moses Lake

My name is Rosie Lohr. I am currently Mrs. Moses Lake and I am competing for Mrs. Washington, because it is my mission is to bring awareness to the public about invisible disabilities.

I chose the Invisible Disabilities Association as my platform and my charity, because I want to give people with invisible disabilities a voice in Washington state and other parts of America. I desire to help people understand that just because a disability may not be readily visible, they should not be denied what they need and questioned at every corner they turn. It hurts. It is not their fault and they deserve respect and not judgment.

Why am I passionate about this issue? On October 8, 1998 I received a phone call while at work that would change my life forever. The call was from my father who was at work at ASIMS, a chemical plant in Moses Lake WA. I took the call and my father said, “You need to sit down.” My first thought was that something must have happened to my four month old daughter; I began to shake. He told me there has been an explosion at the plant and I needed to get to the hospital now. Jeremy (my husband) had been injured.

When I got to the hospital it was mass confusion and no one had any answers. You see, the small town I live in was unequipped for something like this and they had no idea how to treat the men who were injured. Silicon tetra-chloride gas is a highly volatile and potent chemical that can produce “acute tissue damage” (i.e. any moist areas: lungs, eyes, nose, any sweat). It is an acid and burns these areas.

My husband was air-lifted to Harbor View Medical Center in Seattle, WA. I had to leave my daughter with family and get on a jet from Moses Lake to Seattle. The doctors at our local hospital said he may not make it, because the chemical had burned his lungs and eyes so severely.

Jeremy and Rosie Lohr

Jeremy and Rosie Lohr

After two weeks in the hospital and some touch-and-go experiences, he was sent home on oxygen and so our journey began with his disability. He was diagnosed with COPD and after many years and many prayers he regained his sight and uses oxygen on occasion, but always has it with him.

To look at him, he looks healthy. But he cannot walk up a hill, stairs or do any heavy lifting. He gets winded easily and has a cough that never goes away. We have experienced much discrimination and judgment, because he “LOOKS good!” For example, one time when we parked in an accessible spot, a person came up to us to ask for ID to prove he was disabled. At a concert event, I once had to argue with security to let us sit in the disabled seating. People love to whisper and point when I am carrying the heavy bags of groceries and he is not. They don’t understand that he would if he could! There are so many examples of this I could go on and on.

Cheer for Rosie on January 18, 2014 as she competes for Mrs. Washington at the Maydenbaur Theater in Bellevue, WA.  There are 27 contestants from all over Washington.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Matt Barrett Gets His Wish to Attend 2013 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Awards Banquet

Matt Barrett Speaking at the 2011 IDA Honor Awards Banquet

Meet Matt Barrett, a “Walking Miracle” in Denver on October 24th. Matt will be autographing his book, A View from the Street.

Matt Barrett has lived a life most could never imagine. Matt has battled 11 forms of cancer and four brain tumors since he was just two years old.

As if that were not enough, because his face and body are disfigured by over 1,700 major surgeries, strangers have called him a monster, children have hidden behind their mothers, and store managers have asked him to leave the premises.

It is such a travesty when people are quick to judge Matt from the outside, because they are certainly missing out on getting to know this amazing person.

Animals sense Matt's gentle spirit.

Animals sense Matt’s gentle spirit.

Despite a lifetime of fighting cancer, being homeless off and on for most of his adult life, and enduring excruciating pain on a daily basis, Matt remains a giving and loving soul. 

Ask anyone who knows Matt and they will tell you he is a “Gentle Giant.” At 6 foot 4, over 300 pounds with a love for others as big as he is, his nickname seems fitting.

People on the streets don’t have a clue what they are missing when they fail to talk with this man and give him the respect he deserves. Those who hear about Matt’s journey are not only amazed, but inspired to be more appreciative of what they have.

For decades, doctors have called Matt a “Walking Miracle!” He has lived many, many years beyond anyone’s expectations. This has allowed him to continue his purpose in making this world a better place.

In 2011, Matt received a standing ovation as a Special Guest Speaker at the Invisible Disabilities Association Awards Banquet where there was not a dry eye in the house. Today, Matt was named an IDA Ambassador!

Matt has had many other accomplishments:

Matt Barrett and Sherri Connell, wife of IDA Founder

Matt Barrett and Sherri Connell, wife of IDA Founder

Although Matt has beaten countless odds, Matt’s prognosis is not good. Many doctors have told him he only has a matter of months or just weeks.

Thanks to the people who have rallied together to raise the funds, Matt’s wish to travel back to Denver for the 2013 Invisible Disabilities Association Awards Banquet is coming true!

Meet Matt on Thursday October 24th at the Denver Marriott South in Lone Tree. Details and registration: www.ItsNotAnIllusion.com

Matt Speaking at the 2011 Invisible Disabilities Association Awards Banquet

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IDA Ambassador, Matt Barrett

A Lifelong Journey with Special Guest, Matt Barrett

Matt Barrett Gets Wish to Come Back to Attend 2013 IDA Awards Banquet

Matt Barrett’s Website, A View from the Street 

Order Matt Barrett’s Poetry Book, A View from the Street

Lifelong Battle with Illness Claims Man’s Face, Family but Not His Spirit. Martha Kang. September 27, 2013.  Picked up by Associated Press - Man’s long struggle with cancer nears end. October 15, 2013.

Photographer Tells Matt’s Story

Celebrate Life Event for Matt Barrett. May 25, 3013. Seattle, Washington.

Homeless in Seattle - Has helped Matt make 2 trip wishes reality through their supporters

Tent City 3 - Where Matt lived for three years

 

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Illusionists Illuminate Evening for People Living with Illness and Pain

Illusionists, David and Teesha Laflin

Illusionists, David and Teesha Laflin

Press Release

Colorado Illusionists Illuminate the Lives of People Living with Illness and Pain

Denver, CO – October 10, 2013. It’s Not An Illusion! Debilitating illness and pain is real, even though we can’t always “see” it.

Illusionists, David and Teesha Laflin will be making things “appear” in honor of millions of people living with various conditions becoming “Invisible No More” at the 2013 It’s Not An Illusion Awards Banquet on October 24, 2013 at the Denver Marriott South in Lone Tree.

Since 2002, internationally recognized illusionists, David and Teesha Laflin have entertained and inspired audiences through their creative blend of both classic and cutting-edge illusions. They have performed all across the United States and on five different continents. Their programs have been featured at numerous conferences and conventions throughout the world and have reached large-scale audiences through their television appearances. Last year they performed for the Women’s NCAA Final Four in Denver. In addition, David and Teesha are the creators of several illusion training DVD’s and the authors of the popular book “ILLUSIONS.”

The evening will highlight nine IDA Award Recipients who are incredible individuals and businesses making a difference for people living with disabilities. Also enjoy a Silent and LIVE Auction and a delicious dinner and dessert with Honorary Chairs, Adrienne Ruston Fitzgibbons and Jack Fitzgibbons and Emcee, Ed Greene, CBS4 Weather and News Anchor.

Join us and invite your friends, doctors and neighbors for a thrilling evening for a great cause!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by illness, injury and disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Worldwide Outreach Awards Individuals and Organizations Making a Difference

Invisible Disabilities Association Honor Awards

Invisible Disabilities Association Honor Awards

Press Release

Worldwide Outreach Awards Individuals and Organizations Making a Difference

Denver, CO – October 10, 2013. The Invisible Disabilities Association (IDA) has been recognizing individuals and organizations making a difference in the lives of those living with illness, pain and disability since 2008.

Join IDA on October 24th at the Denver Marriott South to help recognize the following amazing people
with our 2013 IDA Honor Awards:

 

  • Corporate - Dave Liniger, Chairman and Co-founder – RE/MAX
  • Founders - Paul Myhill – TrafficJam
  • Healthcare - Marlo Thomas, Award Winning Actress and Author, National Outreach Director – St Jude Children’s Research Hospital
  • Impact -Kimberly McCleary, President and CEO -CFIDS Association of America
  • InspirationKevin Sorbo – Actor, Producer, Director and Author of True Strength
  • Invisible HeroJennifer Brusstar, President and CEO – Tug McGraw Foundation
  • Perseverance - Laura Hillenbrand, New York Times Bestselling Author of Seabiscuit and Unbroken
  • Research - John Kelley, Chair and CEO – CereScan
  • Volunteer - Shery McDonald-Galbreath, Founder and President – SaddleUp! Foundation

Also experience exciting entertainment from Illusionists, David and Teesha Laflin. Meet our Emcee, Ed Greene, CBS4 Weather and News Anchor, as well as Honorary Chairs, Adrienne Ruston Fitzgibbons and Jack Fitzgibbons. Enjoy a Silent and LIVE Auction and a delicious dinner and dessert.

Truly and evening of inspiring stories, touching presentations and lighthearted fun bring awareness to invisible disabilities. Doctors, nurses, friends and family often walk away saying, “Wow! I didn’t get it until tonight!”

Be a sponsor or purchase individual seats. Everyone is welcome! Don’t forget to invite your co-workers and friends!

The IDA Team

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

IDA Founder and President Special Guest on Kidney Talk

Renal Support Network 2013Press Release

IDA Founder and President, Wayne Connell, was Special Guest on Kidney Talk!

Parker, CO – September 12, 2013. The Invisible Disabilities Association Founder and President, Wayne Connell was a Special Guest on Kidney Talk! on August 20, 2013.

He discussed living with invisible disabilities with Lori Hartwell of the Renal Support Network. He shared awareness, tips and insights for understanding and supporting people living with all types of debilitating conditions.

Listen to the interview online!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

RESOURCE:

Renal Support Network

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

IDA President Speaking at The 12th Annual Twin Cities DI Day

Twin Cities DI Day 9-13-13Press Release

IDA President Speaking at The 12th Annual Twin Cities DI Day

Parker, CO – September 10, 2013. The Invisible Disabilities Association is thrilled to announce that our Founder and President, Wayne Connell will be a Special Guest Speaker for The 12th Annual Twin Cities DI Day on September 13, 2013.

The Twin Cities DI Day is recognized as the premier income protection education event in the nation!  Over 250 financial professionals come together each year to hear up to the minute information on the industry, get motivated to protect their clients and to be inspired by stories of real people facing and overcoming the challenges of disability.

Wayne will teach you the Language of Invisible Disabilities.

Wayne married his wife Sherri in 1994. Sherri was suffering from Primary Progressive MS and Late Stage Chronic Lyme Disease and many are surprised when they learn he asked Sherri to marry him anyway.  Wayne knew he wanted to spend the rest of his life with Sherri, even if it meant dealing with pain and suffering. This led to his having a heart for all who live with chronic illness and pain.

Wayne is now passionate about helping others who struggle with disabilities.   The Invisible Disabilities Association was born of his desire is to reach out and help bridge the gap of understanding and support.

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

Contact the IDA Team: Go to the Contact Page on the Invisible Disabilities Association website. Visit the Invisible Disabilities Association at: www.InvisibleDisabilities.org

*DI Day is Disability Insurance Day.

RESOURCE:

Twin Cities DI Day

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Don’t Be Afraid of Life’s Uncertainties

Doctor VisitThis past week Mike and I went to see my kidney doctor, as we do about every 4 months.  The purpose of the visit is to monitor my kidneys and how they are doing.  It’s always like sitting on pins and needles until he reads the numbers from the blood test, which tell you everything.  Fortunately, this past week the numbers were good.

I’ve been off dialysis now for almost three years.  My kidneys started functioning to the point where I did not need dialysis any more.  This is not common and I am very fortunate. However, living with constant uncertainty is not easy.  Many people have illnesses that have no treatment options. I know firsthand how difficult it is to wake up every day and not know my medical future.  Being afraid of this is a normal response.

How I have learned to cope with fear is by talking about it with Mike or someone I know well.  There is something very healthy and therapeutic about vocalizing my struggles.  This has helped me also to accept the facts that I can’t change.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

We All Believe in Love

Kathe and David SkinnerWe  believe in love, we just don’t practice it.

Maybe because we think love has no limits, no boundaries, that all is fair.  Love conquers all and love never ends.  Besides time, love is the greatest healer.  And along with diamonds, love is forever.

If that’s true, what about the chart-topping occurrence of divorce?  It’s said that love never fails, but it does.  As for remarriage, those vows would have to be toned down to reflect this second-hand (or third or more) love.   But they’re not.

Love is conditional.   We love for different reasons, with the reasons shifting and shaping over time together and time separately.  In the beginning, each of us has a different definition, based mostly on expectations.  Usually kicking and screaming, the realization hits that being “in love” suggests a togetherness, a “we-ness”; it’s that definition that relationship is about.  It’s a definition that must be known, spoken aloud, and agreed to by both parties and must be flexible enough to join us wherever we are in life.  Most of the couples I see in my office are still clinging to a separate love definition.

In a purely selfish way, my attention comes to focus on invisible disability.  And how that sometimes becomes a deal breaker when it comes to the limits of love.  Besides losing partner-love (or maybe because of it), self-love takes a big hit when the cause of break-up may be disability or chronic illness. Don’t kid yourself (but you will) into believing that your definition of love is your partner’s definition. Remember that the definition of love morphs over time; love is defined by each partner because of all the elements that go into who we are at that moment.

I always disclose to my clients the fact of my MS; one time a client told me he couldn’t work with me because I was “broken”.  Taken aback, I recovered enough to ask him to reconsider, to think about it until our next session.  I’d never had a client be so direct and I’ll admit I was hurt to be judged for my disease.  We did work together very successfully and, at his final session, he told me that he had come to realize that because of his severe anxiety, he was “broken”, too.  I’ve never forgotten how moved I was that my invisible disability led to his introspection and greater understanding of himself.  Best of all, he not only didn’t judge me, but he didn’t judge himself.

It’s crucial at the most basic, core level to actively and with intent search out love’s meaning.  Taking for granted that your definitions are the same leads only to stalemate; bullying for agreement leads to worse.  This love is about the “us-ness”  each of you gives over; anticipating that it will not always be as you first described love in those first dewy moments, faces the reality of who we become together.  Or if we do at all.

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Friendships Over Fragrances

Is-a-loved-missing-from-your-life

A couple of years ago, my wife, Sherri, said to me, “We need to go to San Diego for surgery.” Really? San Diego? Walks on the beach! Shamu! The zoo! It sounded like fun. OK, the surgery part didn’t – but we had not had a vacation in almost three years, and I could think of worse places to go in February. Maybe we could even make a stop and see Mickey Mouse.

Then, I remembered that we could not fly to San Diego. We would have to drive from Denver, two days out and two days back. Why would we have to drive? In addition to living daily with Multiple Sclerosis (MS) and Lyme disease, Sherri also suffers from a medical condition known as Multiple Chemical Sensitivity (MCS). Airplanes and rental cars are out of the question. Our car is an older model car and is a safe place for us.

Finding a place to stay is also not an easy task. We needed to stop for one night on the way to California and one night on the way back. It usually takes about a month for me to prepare for a trip like this. Before we leave, I fill up the car and cargo carrier with all the necessities, including gas filtering air purifiers, UV mold killers, oxygen bottles, coolers for food, sheets, towels, pillows, sleeping bags and couch cushions (in case we have to sleep in the car). We call hotels in advance to have them clean the room with baking soda and vinegar. We almost did have to sleep in the car on the way back, because the hotel said they gave away our special room. Fortunately for us, they didn’t, although the room was barely tolerable with only two air purifiers on full tilt.

We wanted to spend three nights at Disneyland and three days in San Diego. Disney was amazing. They blocked off our room in advance and did their special allergy cleaning and even provided their own air purifier for the room. Disney also turned off the fragrance generator in the hotel lobby and permanently removed the air fresheners in each of the first aid station restrooms in their parks, not only at Disneyland, but at Walt Disney World as well. They did all of this because of their world class service and because of the educational material we provided them from the Cleaner Indoor Air Campaign.

Finally, we stayed in San Diego for the surgery and recovered at the home of our great friends, Karyn Buxman and Greg Godek. Karyn is a nurse, Hall of Fame speaker and the author of the “What’s So Funny About … ” series of health humor books. Greg is the best-selling author of 1,001 Ways to be Romantic. (You can read posts from Karyn and Greg on Disability.Blog.)

In order for us to stay at their home, Karyn and Greg had to change their laundry detergent to fragrance free a few months before our visit. A week before we arrived, they started to use fragrance-free soap, shampoo, hairspray and deodorant. They also sealed in bags and hid away any candles with fragrances. We felt very honored that they would not only host us in their home, but also think so much of us as friends that they would change some of their personal lifestyle habits and choices.

The trip turned out to be amazing, because Disney, as well as Karyn and Greg, chose Friendships over Fragrance. Most people have experienced or know someone who has difficulty breathing, nausea or headaches from things such as cigarette smoke, diesel exhaust, pesticides, cleaning agents or hanging out in the laundry detergent aisle for too long. Even so, when it comes to those who report moderate to severe adverse health effects from chemicals used in everyday items, such as perfumes, fragranced laundry and personal care products, friends and family are often perplexed.

However, millions report living with various Environmental Illnesses (EI), such as Multiple Chemical Sensitivities (MCS), Toxic Injury, Chemical Injury and/or Toxic Encephalopathy. In addition to the many people who have reported worsening of allergies, asthma and COPD, others particularly at risk include those battling illness or cancer, or living with Autism or Post-Traumatic Stress Disorder (PTSD), as well as expectant mothers and babies.

Some of the symptoms reported range from mild to debilitating coughing, difficulty breathing, closing of the airways, sneezing, nausea, headaches, dizziness, weakness, numbness, fatigue, flu-like symptoms, pain, joint swelling, migraines, vertigo, fainting, behavioral and mood changes, depression, hormone dysfunctions, memory loss, cognitive dysfunctions, paralysis, seizures, swelling of the brain and more.

Surprisingly, issues with fragrances are not as rare and unusual as people may think. Research done in 2004, 2005 and 2009 by Stanley M. Caress and Anne C. Steinemann found that nearly 38 percent of Americans report adverse effects when exposed to a fragranced product. For instance, approximately 20 percent of Americans report breathing difficulties, headaches or other health problems when exposed to air fresheners and deodorizers, and more than 10 percent report adverse effects when exposed to laundry products vented outdoors. Percentages are nearly twice as high for people with asthma. With approximately 310 million people in America in 2010, that is almost 117 million Americans who have adverse effects to normal, everyday products.

It is suspected that many more may possibly live with these reactions, but do not make the connection between the fragrances and their symptoms. Therefore, it is hard to determine exactly how many more people are affected. In a 2010 study of 25 fragranced consumer products, researchers identified 133 different VOCs (volatile organic compounds). Of those 133 VOCs, 24 are classified as toxic or hazardous under at least one law.

Just taking laundry products alone as an example, the University of Washington found that all but one of the chemicals found in these products are “regulated as a toxic/hazardous chemical” under 1-7 laws. They are also listed either as a recognized or suspected carcinogen, as well as a neuro, immuno, kidney, liver, blood, developmental, respiratory, gastrointestinal, reproductive, endocrine, skin and/or sense organ toxicant. Therefore, we cannot be entirely sure what kind of havoc these chemicals and others in our environment are doing to our bodies, health, blood, organs, hormones, immune or nervous systems.

When making modifications for people living with EI, keep in mind that everyone is different. Some reactions are more severe than others; some limitations from work, stores, public places and events are more constricting than others; and some can tolerate a certain product, but not another. For example, Charlie may notice he gets moderate headaches and nausea for several hours when he is around cigarette smoke, diesel fumes or heavy perfumes, while Sara may report debilitating migraines, pain and fatigue for several days or more from the above, as well as fragranced items, such as laundry, soaps, shampoo and deodorants.

As we can imagine, people living with these conditions can experience minor to extreme limited access to public places, issues at work or inability to attend functions with friends and family. Regrettably, these barriers may lead to feelings of loneliness, isolation and abandonment when loved ones choose not to forgo the fragrance products that cause these problems. Therefore, if our loved ones are telling us they are getting debilitating migraines, dizziness or fatigue from our fragranced products, maybe we can consider simply omitting or switching them to a fragrance-free version so that our friends or family members may remain a part of our lives. Choose Friendships over Fragrances.

May is Multiple Chemical Sensitivity (MCS) Awareness Month in many states and cities across the nation. Learn more at about this topic at the Cleaner Indoor Air Campaign, check out the Friendship over Fragrances resources as well as the campaign’s downloadable posters, or watch this video for more information.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.

This article was first published on Disability.Blog, by Disability.Gov on April 29, 2013.

RELATED ARTICLES:

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MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

 

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

My First TV Interview

Angela Pierce TV InterviewRecently, I was a guest on a local TV program hosted by Scott Kaplan and Amber Mesker.  It was the first time I had ever been interviewed.  I did not realize how simple the set up was, as I expected to see a lot more cameras, lights and noise.  It was a simple set and very quiet.

I was asked to come on and tell my story about my accident.  When the interview began, I thought it would be about how to motivate people via my story, but instead it was an account of what actually happened.  I took a moment in my mind to figure out how to bring motivation to the story, so I referenced the moment when I was put in the ambulance and told Scott and Amber that my thoughts were centered on survival.  Instead of laying in a hospital, I’ll be laying in the sun and enjoying the weather.

The way I thought I could motivate people was to tell them that the most important thing when facing tragedy was to tell yourself, “don’t give up.  You’ll have your day in the sun if you hold on to life.”  After almost thirty years, I still tell myself that same message and find it to be very helpful to me as new challenges and struggles surface.

In conclusion, here’s the message for you, the readers:  When difficulty or tragedy strikes, realize that there are many different ways you can respond.  The most important thing to remember is that you can tell yourself is that it will be OK.  The moment won’t last forever.  You are worth more than the price of the trauma!

RESOURCE

U-T San Diego – Front Page with Scott & Amber. Watch Angela’s interview. January 14, 2013.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

The Visible Invisible Disability

Wayne-Connell-and-Matt-Barrett-2011By Wayne Connell, Founder and President of the Invisible Disabilities Association 

What is a disability? In general, the term disability is often used to describe a physical or mental challenge. This could be a bump in life that can be managed, or a mountain that creates serious changes and loss.  Either way, this term should not be used to describe a person as weaker or lesser than anyone else!

Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.  Just because a person has a disability, that does not mean they are “disabled. “ Many living with physical or mental challenges are still active in their work, sports or hobbies. Some with disabilities are able to work full or part time, but may struggle to get through their day, with little or no energy for other things. On the other hand, others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and need assistance with their care.

According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who:  Has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment or is regarded as having such an impairment.

Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions such as seeing, hearing, talking, walking, climbing stairs and lifting and carrying, or has difficulty performing activities of daily living, or has difficulty with certain social roles such as doing school work for children, working at a job and around the house for adults.” Statistics show that disabilities affect one-fifth of all Americans.

Often people think the term disability only refers to people who use a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.

The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

In addition, someone who has a visible impairment or uses an assistive device, such as a wheelchair, walker or cane, can also have invisible disabilities. Whether or not a person uses an assistive device, if they are debilitated by symptoms like those described above, they live with invisible disabilities.

My friend Matt Barrett is a real example of someone living with visible invisible disabilities. Matt is 46-years-old and has battled 11 types of cancer since the age of two, including basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. He has had over 1,700 surgeries and has lived with unbearable pain and fatigue for decades.

Matt has also been homeless off and on for much of his adult life. Matt is originally from Grand Junction, Colorado and has also lived in Portland, under a bridge in Los Angeles and in what is called “The Hole” in Seattle. Until a year ago September, he lived for three years in a tent in Tent City 3 in Seattle. He has written a book of poetry about being homeless and a blog, both called A View from the Street.

In addition to the battle of illness and being without a home, Matt has also lived with discrimination that most of us cannot fathom. Due to the surgeries Matt has had on his face, he has endured stares, dirty looks and has even has been asked to leave retail stores because he was “scaring” someone’s child.

You would think after a life of being treated this way, that Matt would be a bitter and angry person. However, those who take the time to get to know him find that he is a very kind, loving and giving man. What’s more, they are inspired and their lives are deeply enriched.

In 2011, freelance photographer Ilona Berzups was so moved by Matt’s story that she embarked on a photo essay project called, “Walking with Giant – One man’s battle with homelessness and debilitating illness.” (Matt’s nicknames are “Gentle Giant” and “Bear” because at 6’ 5”, he towers over most people.)

Also in 2011, Matt was determined to travel to Colorado to attend the Invisible Disabilities Association’s Awards Banquet and to spend time with a fellow high school classmate – my wife, Sherri.  Matt has wanted to attend for many years. After getting more bad news from his doctors about the tumors in his brain, he almost canceled. However, once you know Matt, you know that nothing was going to stop him from coming to Colorado. (He attended this past October for a second year as well).

When we found out Matt would be joining us in person, we immediately re-arranged the evening’s schedule and invited him to be a surprise Special Guest Speaker. Karyn Buxman, IDA Advisory Board member, National Hall of Fame speaker and nurse, gave a brief introduction as Matt approached the stage. Just a small glimpse into his life drove the attendees to their feet when he stepped up to the podium.

Matt briefly shared about his journey and appreciation for IDA’s compassion, awareness and support for him and for others. There was not a dry eye in the house, as lives were changed by Matt’s incredible lifelong story of perseverance in the midst of incredible hardship and pain.

By sharing Matt’s journey, our hope is that his struggles, pain and sheer courage will help us all to look beyond our preconceptions. Let’s not judge others by the way they look on the outside. Instead, let’s give love to one another and find out what they have been through, what they need and who they are on the inside.

Unfortunately, people often do judge others by what they see and jump to conclusions about what they can or cannot do. This can be equally frustrating for those who may appear unable, but are perfectly capable, and those who appear able, but are not.

The bottom line is that everyone with a disability is different – sometimes visibly, sometimes invisibly and sometimes both. They have varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes. Let’s learn to envision a world where people living with illness, pain and disability will be Invisible No More! 2013 here we come!

This article was first published on Disability.Blog by Disability.gov. December 21, 2012.

MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

 

MORE ABOUT MATT BARRETT:

A View from the Street. Blog by Matt Barrett

More Articles About Matt on IDA

Walking with Giant. Photo Essay by Ilona Berzups

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

A Tick Bite Changed My Life Forever

A Tick Bite Changed My Life Forever - Huffington Post 12-12-2012 Set 2HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.

The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.

Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.

The Huffington Post wrote:

Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.

“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”

“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.

The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!

Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!

RESOURCES

Invisible Disabilities Association

HuffPost LIVE

The Huffington Post

Not Handicapped Enough

About Sherri Connell

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, model in fashion shows, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. Sherri also lives with Chemical Injury, which causes her to be very isolated from family and friends. Her unbearable and disabling pain, fatigue and cognitive disorders are unrelenting 24x7. Sherri desires to help others better understand debilitating conditions, as she shares her story and information about her illnesses. Despite her daily pain and losses, Sherri's writings and videos come to life with her humor and positive attitude. Sherri's journey and struggles for others to understand her disability have inspired her husband, Wayne, to reach out to millions of others like Sherri, through the Invisible Disabilities Association. Sherri is not a medical professional, please seek advice from your doctor before making any changes to healthcare or lifestyle.

Humor for Health and Well-Being with Karyn Buxman, RN, MSN: IDA Video Seminar

Humor for HealthIDA Founder and President interviews  Karyn Buxman, RN, MSN, Hall of Fame Speaker and Humorist.

Karyn is the past president of the Association for Applied Therapeutic Humor, the creator of the Nursing Jocularity online publication and author of the What’s So Funny About … book series.

Interview by Wayne Connell, Founder and President
Invisible Disabilities Association
www.InvisibleDisabilities.org

ADDITIONAL RESOURCES

http://www.InvisibleDisabilitiesCommunity.org
http://www.Facebook.com/InvisibleDisabilities
http://www.InvisibleNoMore.TV
http://www.Facebook.com/InvisibleNoMoreTV
http://www.YouTube.com/InvisibleDisability
http://www.Twitter.com/INVDisabilities
http://www.InvisibleHero.org
http://www.CleanerIndoorAir.org

All Rights Reserved
Copyright 2012 Invisible Disabilities Association

About Karyn Buxman

Karyn Buxman, RN, MSN, CSP CPAE is on a mission to improve global health through laughter and to heal the humor-impaired. Karyn is a Hall of Fame Speaker and the owner of Journal of Nursing Jocularity. For periodic tips on how to improve your life with strategic humor, visit her website.

A Love That’s Unbroken

Valentine HeartToday is Valentine’s Day. Many people will celebrate it with the one they love. I asked my friend, relationship expert and New York Times best-selling author of 1001 Ways to Be Romantic, Greg Godek, for his thoughts on “love.” This is what he shared.

“It’s all about love (just consult the Bible or The Beatles). But if love isn’t expressed on a regular basis, it withers (just consult divorce rate statistics.) This is where romance comes in (just consult my book, 1001 Ways to be Romantic). Romance is the expression of love. Romance is the action step of love. Now, here’s the secret that is hiding in plain sight: Romance is easy! Romance is really just creativity applied to your relationship. Romantic gestures don’t need to be grand or expensive. Actually, the best romance is the most heartfelt – the gesture that shows you’re thinking of your partner, the little gift that shows you really understand and appreciate him or her. Romance keeps love alive. And while love is desired by everyone, it is absolutely critical for couples who are dealing with invisible disabilities. You need love to sustain you through experiences that other people can’t even imagine. And in order to keep love alive, you have to nurture it every day. Every day. Romance: It’s not just for Valentine’s Day anymore.”

Greg points out that, “it’s all about love.” But what kind of love is needed to marry someone who is chronically ill or in pain? I had no idea that marrying someone who had a disability was a rare occurrence. Yet another great friend of mine, Peter Strople, told me that I was his inspiration because I married my wife, Sherri, who was already living with the debilitating effects of multiple sclerosis (MS) and Lyme disease and unable to work anymore, when I met her.

I know my wife is my inspiration, but I never thought that I was anyone else’s inspiration. Why wouldn’t I have married Sherri? She was and is funny, smart, beautiful, insightful and creative. And did I mention beautiful? I married HER. She is not an illness, she has an illness. I always tell the guys who are in disbelief, “You would have married her, too!” I’m just glad I got there first and besides, I was just getting the “in sickness” part of our vows out of the way.

We need to value people for who they are and not what they have or don’t have with regard to illness and pain. I try to live daily by Peter Strople’s great quote, “When in doubt…love.” Love first and love last.

This concept seems so rare sometimes, but after 18 years of marriage, I am starting to see some hope. I met a young couple this past weekend, Stephen and Sarah Sicola. They started an amazing company that has awesome deserts which are actually healthy for you. If you are in Austin, TX, make sure to check out Taste, AHA! Their company was born out of Sarah’s struggle with an unknown chronic illness. Stephen wasn’t deterred by Sarah’s illness; in fact, it became his mission to not only marry Sarah last December, but also to use their journey to help others with health needs. And those of us with a sweet tooth are mighty grateful he did!

IDA ambassador Antartic Mike Pierce married his wife Angela after she had a horrific climbing accident 27 years ago that broke her bones in 168 places (although you wouldn’t know it by looking at her today because of the invisible nature of her injuries).  Mike said “I do” 21 years ago knowing that Angela was not her injuries, but an amazing survivor. Mike valued her for who she was, not what she had endured.

Laura Hillenbrand, New York Times best-selling author of Seabiscuit and Unbroken, has lived daily with chronic fatigue syndrome for the past 25 years. Laura shared in a blog by Tara Parker-Pope that ran in The New York Times on Feb 4, 2011 how she manages her life with illness. She notes that her husband married her knowing full well the struggles she faced because of her disease.

“I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.”

Relationships with someone who is ill can bring extra challenges. Couples need to take time together, away from discussions of medical issues and bills. They may not be jet-setting off to a romantic island, but they can still do simple things like setting aside regular nights to have a special dinner, watch a movie or play a game. Sharing conversation about things outside the everyday problems and enjoying activities they have in common is essential to maintaining a thriving relationship.

The couples in the examples above knew that their married life would probably not be the same as that of couples who do not face illness or disease, but that the relationships were worth the journey. The husbands believed that although their wives were quite fragile in some ways, they were also extremely strong with many amazing traits to offer.

As in the story of Seabiscuit, people need someone to believe in them and to love them. Love helps in the mending process and makes all the difference. People are worth loving, especially while enduring pain and illness. When I show my wife the love and care she needs, her “brokenness” feels unbroken.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv.  You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member on www.InvisibleDisabilitiesCommunity.org.

This article was first published on Disability.Blog, by Disability.Gov on February 13, 2013.

MORE IDA ARTICLES PUBLISHED ON DISABILITY.BLOG:

A Love That’s Unbroken

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

Friendships Over Fragrances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability

What’s So Funny About …

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Don’t Judge by Appearances

Disabled Permit OnlyBy Wayne Connell, Founder and President of the Invisible Disabilities Association 

Have you ever seen someone get out of a car parked in a space reserved for people with disabilities, who did not LOOK disabled? Did it make you feel very uncomfortable or even upset? Did you let them know of your disapproval by giving them a dirty look or yelling at them?

Well, you are not alone. Many people are very disturbed by the sight of a seemingly mobile person taking the space of someone who is truly in need of it. After all, we want to protect the rights of people for whom these spaces are reserved!

However, in our efforts to help those who deserve these parking spaces, we actually may be hurting someone who has a legal right and a legitimate need to park there. How can this be true, you ask? Isn’t it obvious who does and who does not have a disability?

Let me Sherri Connell on Scooter 2.share the following story about my wife, Sherri.

It was a weekend afternoon, and Sherri wanted to head to the department store to pick up some items. She knew that driving would be tough enough, but she felt spending time with her niece would be worth the difficulty of the trip.  

Sherri and her niece pulled into the store parking lot, and she drove around until she found an accessible spot near the front. Sherri pulled out her accessible placard and placed it on the back of the mirror. She then proceeded into the store with her niece to shop.  

Once inside, they looked for an electric motorized cart. They located one and proceeded around the store. Of course, being in her late twenties and looking much younger, Sherri would elicit stares from people wondering why she was using the cart. Some even wondered out loud, especially children who would point and ask “Mommy, what’s wrong with her?”  

Why anyone would ride one of the store scooters unless they really needed it is beyond me. Sherri’s scooter at home goes 8 miles an hour and has head lights, tail lights and a headrest. The mall carts crawl along slowly, and everyone stares at you.

Sherri and her niece finished up their shopping and returned to their car. Sherri started the car and looked in the mirror and noticed a police car with its lights flashing right behind her, blocking her in. There was an immediate knock on her window. Startled, she rolled down her window and an officer stated that she was not allowed to park there, because she was not handicapped.  

Sherri said that the placard was hers and she handed the officer her license, her placard registration and a multiple sclerosis (MS) card. Sherri mentioned that she had the right to park there, because she was disabled with MS and had gotten approval from her doctor and the motor vehicle department.  

The officer replied, “I don’t care how many multiple problems you have, you can’t park there. I saw you walk inside and back to the car, and you looked fine to me.”  

After about 10 minutes of trying to explain her disability to the officer, Sherri started to get quite frustrated. She then asked very politely for the officer’s name and badge number, and if he would please move his car. Of course, her nervous system started to work overtime and her brain went into fight or flight mode. Luckily for the officer, he said he would move his car. Then he stated, “See those people over in that Cadillac, they are not handicapped either.” 

The conclusion of the story is that the officer was eventually reprimanded for the way he was hassling people who had the legitimate right to park in accessible parking.

The general qualifications for accessible parking spaces include those using wheelchairs, walkers, crutches, canes and assist dogs. Nonetheless, most of us do not realize they also include certain impaired functions of the heart or lungs, as well as conditions which are worsened to a specified impairment by walking a certain distance.

People with a variety of disabilities may qualify to park in these spots. Moreover, not all impairments are readily evident to the onlooker. Because of this, we refer to conditions which cause debilitating symptoms that are not so apparent from the outside as “invisible disabilities.”

There are millions of people who are forced to contend with serious illnesses, injuries and circumstances, which have left them with mountains to climb every time they take a step. Most people do not realize a person can have hindrances on the inside, which may not be visible on the outside. Their restrictions may not be conspicuous at a glance, but their pain, limitations and inability to function normally can be debilitating.

What may seem easy to you may seem like a 14,000 foot hurdle to them. Many even collapse in stores, become very dizzy and weak or even black-out. Being able to park close to the entrance of a building when they need to allows them to run an errand they otherwise would not have been able to conquer.

At any rate, the purpose of accessible spaces is to assist those with many types of disabilities and health conditions. For those with various types of limitations, the spots help make it possible for them to shop or visit the doctor.

How do you know who can park in an accessible space and who cannot? Look for a temporary or permanent placard in the front window or a disabled license plate. These items are received after an application, which is completed by a patient’s doctor, is approved by the Department of Motor Vehicles (DMV).

Each state’s DMV has specific guidelines and requirements the person must meet in order to receive a placard or license plate. Most states take into consideration the impairments due to certain conditions, as well as the implications stemming from aggravations of these conditions. Therefore, if a person is issued a license and is displaying it, then they have the legal, medical right to park there.

The following are few assumptions regarding accessible parking:

  • Assumption 1 – Drivers can simply request a placard from the DMV without any proof or documentation.  

Drivers cannot request an accessible plate or placard without a form completed by a licensed physician and with their verifiable license number.

  • Assumption 2 – Doctors are irresponsibly filling out forms for patients. 

Doctors have no personal gain by doing so.

  • Assumption 3 – Drivers are borrowing a placard from a relative. 

Many people believe this happens often, but do not personally know anyone doing so. At any rate, we cannot assume someone is using a placard that does not belong to them, because they do not “look” like they have a disability.

If someone personally knows an individual who has stolen or borrowed a placard, they can file a complaint with the DMV. If we have further concerns with the application and qualification process, we should consider using the legislative process to address them, rather than confronting individuals in a parking lot.

Chances are the person displaying a placard or plate is in fact parked legally and needs the space for physical and/or medical reasons. As you can imagine, it is difficult enough to live with such illnesses, injuries and disabilities that wreak havoc in one’s life without being harassed every time one needs to go shopping or to the doctor. Finally, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend may be standing right in front of you!

This article was first published on Disability.Blog by Disability.gov. October 31, 2012.

Photo courtesy of Hernando County, Florida Tax Collector

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

What’s So Funny About …

 

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.