IDA’s 2014 Invisible Disabilities Week in Denver and Online

2014 Invisible Disabilities Week 10-19 thru 10-25 IDA Banner

Join the Invisible Disabilities Association for our 2014 Invisible Disabilities Week Online!

Together, we can bring awareness, education and support to your neighborhood and around the world!

Invisible Disabilities Week on FacebookInvisible Disabilities Week on Google+  – Invisible Disabilities Week Website

10 Ways to Participate Now and Through October 25th:

1) RSVP on the Invisible Disabilities Week on Facebook or the Invisible Disabilities Week on Google+. Invite your friends and circles to join this event, share with friends, groups and pages! Tell others about Invisible Disabilities Week! www.InvisibleDisabilitiesWeek.org

2) Tell others about the Invisible Disabilities Association! Spread awareness and education about people living with debilitating illness and injury, as well as support to those living with www.InvisibleDisabilities.org

3) Join us in Denver on October 24th for our 2014 Awards Gala! www.ItsNotALaughingMatter.org

4) Send a donation to help us continue to reach around the world with awareness, education, resources and support through our websites, special projects, pamphlets, videos, book, articles, radio interviews, events, seminars, award nights and so much more! www.InvisibleDisabilities.org

5) Start your own IDA Fundraising Page! Invite friends! Raise donations! https://connect.clickandpledge.com/Organization/InvisibleDisabilities/

6) Order our pamphlets and books to distribute to friends, family, doctors, neighbors and more for better understanding in your parts of the world! www.invisibledisabilities.org/shop

7) Watch and share our videos with amazing Award Recipients and Special Guest Speakers to bring awareness, education and support to others! www.YouTube.com/invisibledisabilities

8) Share IDA articles and radio interviews with friends, family, doctors and groups on Google+, Facebook, Pinterest, Twitter and more to bring awareness, education and support to the world! www.InvisbleDisabilities.org

9) Order cool Invisible Disabilities shirts, hoodies, bumper stickers and more! www.IDAstuff.com.

10) Support IDA whenever you shop online! www.invisibledisabilities.org/shop

Sincerely,

The IDA Team
Invisible Disabilities Association
www.InvisibleDisabilities.org

IDA Communities:
www.InvisibleDisabilitiesCommunity.org

IDA Social Media:
www.Facebook.com/InvisibleDisabilities
https://plus.google.com/+InvisibleDisabilitiesOrganization
www.Twitter.com/InvDisabilities
www.Facebook.com/InvisibleNoMoreTV

IDA Videos:
www.youtube.com/InvisibleDisability
www.YouTube.com/InvisibleNoMoreTV

IDA Special Projects:
www.CleanerIndoorAir.org
www.InvisibleHero.org
www.InvisibleNoMore.TV
www.Programs4People.com

The Loneliness of Illness and Pain

Loneliness-Illness-Pain-Invisible-Disabilities-Association“You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!”

When we break a leg, are we better off hopping on it or using crutches? Right after having major surgery, would we recover better if we went hiking or if we rested a bit in the hospital? We all know the answer to those questions. Otherwise, there would be mountain slopes instead of gurneys outside of every operating room.

When dealing with a broken leg, it heals and the person returns to life as usual. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Although we might think our loved ones with invisible disabilities are lazy and sleep all day, they may be having difficulty sleeping and are feeling sleep deprived. Thus, we need to allow them to rest whenever possible. After all, they are busy trying to maintain their condition and often have to push themselves hard to accomplish a few simple chores. With each activity they give their effort to, another could be forfeited and a price paid. After being limited for a while, they will begin to learn how to juggle their efforts and will discover what and how much activity causes them to hit a wall. [Read more...]

My Disability May Be Invisible, But I’m Not

 

Hannah-Andrusky-Invisible-Disabilities-AssociationBut you don’t look sick.” “But you LOOK good.” “It’s all in your head.” “You just want attention.”

When most people are sick with the flu or a fever, they become pale and droopy and their hair is in a tussle. Therefore, when we meet someone who tells us he or she is ill or has an invisible disability, but he or she does not appear to be sick or in pain, we are often perplexed. Despite their appearance, we must realize that there is a difference between having a temporary cold or the flu and living day after day with a chronic illness or in chronic pain.

Many chronic conditions and disabilities are not as noticeable as a bad case of the flu. For instance, a person can battle symptoms such as extreme fatigue or cognitive impairments on the inside, even though he or she may appear healthy and well on the outside. Just the same, a person can have horrible pain or dizziness, despite the fact that he or she may seem strong and able.

IDA Ambassador Hannah Andrusky is someone who looks amazing and healthy on the outside while battling from injuries on the inside. In January of 2012, a serious car accident sidelined Hannah’s career as talk show host and stylist, as well as her confidence and self-esteem. Her ‘invisible disability‘ of concussion syndrome left her depressed, exhausted and even suicidal. Hannah’s medications caused her to gain weight and have severe mood swings, contributing to her lack of equilibrium on many fronts. A single mother and a daughter, her caretakers often had enough of the resulting behaviors.

Oftentimes, the disbelief is magnified because the person with the illness tries to put on a brave “I’m doing great” face, especially around doctors. Nobody wants to look sick. But Hannah learned that she needed to show how the accident had really impacted her, so that her neurologist could see the real extent of her injuries. Hannah writes in Living the Invisible Disability:

“I was very frustrated. He had always told me he would keep me under observation for a year and see what happens. It had been a year and a half since the accident. This doctor saw me once every six weeks for 10 minutes. I was pretty sure I knew my body better than he did. Something was still very wrong and without the proper information, I didn’t know how to heal myself. I dragged myself to his office. This time, though, I didn’t dress well or fix myself up like all the previous visits. Let him see me as I really was.

Well, it wasn’t pretty. I barely had the energy to get myself there. No makeup, no pretty dress; I showed up looking the way I did at home. One of the problems with this kind of injury is when you look good on the outside, everybody just says, “What’s wrong with you? You look fine.”

I was lying on the table when he entered the exam room. I wasn’t going to put on a brave face this time. I told him I was sorry but I didn’t have the energy to get up. It was true.

My neurologist sat down, looked at me, put his hand on my knee, and said, “Hannah. You’re going to be okay. I think you’ve had some situational depression. There’s a lot going on in your life….” He was so condescending; I nearly went through the roof.

I interrupted him, practically shouting. “Are you kidding me?! Do you think I’m sitting here in your office because it’s fun?!”

I laid into him. I was entirely done with feeling like he was discounting what I was telling him. “I had suicidal thoughts last week. Again. What is wrong with me? I… want… the PET scan!”

Without a word he got up and started typing into his laptop. “Okay. I’ll get you the PET scan.”

We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing his or her situation or trying to pull the wool over our eyes, because to us he or she looks fine. Even professionals struggle with believing the person’s illness and injuries. I find that the real experts are the ones who live daily with illness and pain, year after year.

So how can we help? As we have learned, it is difficult to recognize there is a need by simply looking at someone with an illness or injury. On the outside, they may appear physically able to accomplish tasks because their fatigue, pain and other symptoms are on the inside.

As a result, we must learn not to disregard what our loved one is telling us simply because we cannot see the damaged organs, cells, muscles, bones and nervous systems from the outside. Thus, the first thing we must do is to learn to listen, without discounting what we cannot see.

We often fear that helping others will be time consuming. We think that to make a difference, we would have to cook all their meals, run all their errands and clean their house every week. Even the simplest things can go a long way in helping them conserve energy, such as making lunch for them once a month or picking up some groceries or driving them to an appointment.

Many people are genuinely willing to help, but do not know where to begin. Because of this, we often offer by saying, “Call me if you need anything.” This is a great effort to reach out, but unfortunately, it does not work. For that reason, we cannot put the ball in their court and expect them to call us. So, how can we help if they will not ask when they need it?” Simple…we call them!

As a whole, we must remember to listen, believe what we hear, allow them to say, “No” and offer specific help that is convenient for us and them. I know Hannah’s family and friends helped her when possible with her recovery.

Many people have allowed their illness and disabilities to be a catalyst to help others on their journeys and Hannah leads by example. With faith and a keen sense of knowing she experienced these things for a purpose, Hannah began acknowledging her struggle publicly, eliciting responses from those with similar issues due to Post Traumatic Stress Disorder (PTSD), illness or the basic trauma of living in our changing world. She chose to become a student of what worked for her in her recovery process, perspective and the perceptions of the gifts she knew she was intended to pay forward. Now, Hannah speaks, teaches, coaches and has authored the very soon to be released book Living the Invisible Disability – Coping with Post Concussion Syndrome, Traumatic Brain Injury & Depression. You can learn all about Hannah on her site, Hannah Talk.

There are countless people who live with invisible disabilities. They are all around us. Even though we do not see their illness or pain, we do see them. Let’s all help them become Invisible No More.

This article was first published on Disability.Blog, by Disability.Gov on April 16, 2014.

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.

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. You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/ 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).

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.

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

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!

Invisible Disabilities Association in The Denver Post

The Denver Post, Joanne Davidson. 11-17-13

The Denver Post, Joanne Davidson. 11-17-13

The Invisible Disabilities Association (IDA) is absolutely thrilled that The Denver Post took notice of the amazing work the IDA is doing to bring about awareness, education and support to millions of people living with debilitating illness and pain.

IDA’s passion is to bring about a better understanding of medical disabilities that are not always obvious to the onlooker, in turn restoring relationships for those who live with debilitating conditions. IDA does so through their websites, booklets, pamphlets, articles, seminars, events, videos, radio interviews and resources as well as our online community and social networks.

Annually, since 2008, IDA has given the IDA Honor Awards to individuals and organizations making a difference for those living with debilitating conditions.

The Denver Post, Joanne Davidson 11-17-13

The Denver Post, Joanne Davidson 11-17-13

Thank you to The Denver Post and society editor, Joanne Davidson for increasing this vital awareness. Together, we can make a difference in the lives of so many!

RESOURCES: 

Invisible Disabilities Association awards dinner: Photos from the evening. The Denver Post. Mile High Style. Joanne Davidson. Photographer: Steve Peterson, Special to The Denver Post. November 17, 2013.

Invisible Disabilities Association honors its champions. The Denver Post. Mile High Style.Joanne Davidson. Photographer: Steve Peterson, Special to The Denver Post. PDF.  November 17, 2013.

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!

The Villager Newspaper Shines a Light on IDA’s Awards Night

Wayne Connell and Scottie Taylor Iverson, The Villager Newspaper

Wayne Connell and Scottie Taylor Iverson, writer for The Villager Newspaper

Annually, since 2008, the Invisible Disabilities Association has highlighted individuals and organizations making a difference in the lives of those living with debilitating conditions.

We have done so by giving awards to incredible people across the nation. Some have faced challenges themselves, others simply have a heart for those who are hurting.

We are honored to have Scottie Taylor Iverson spot IDA out of a crowd and join us on our amazing quest.

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 10-10-13

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 10-10-13

She was so kind as to highlight IDA’s 2013 Honor Awards Banquet in the Flair! section of The Villager Newspaper and followed up the full-page spread with a very exciting follow-up story!

What a thrill to meet Scottie and have her tell her readers about our journey to bring awareness and education to the world, as well as hope and compassion to those living with illness, pain and disability.

Thank you, Scottie and The Villager Newspaper!

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 11-14-13

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Scottie Taylor Iverson. 11-14-13

 

RESOURCES:

Invisible Disabilities Association to honor 9 champions from around the nation. The Villager Newspaper. Flair! Scottie Taylor Iverson. Online excerpt. 10-09-13. Membership required to view full article.

Invisible Disabilities Association honors visible heroes. The Villager Newspaper. Flair! Scottie Taylor Iverson. Online excerpt. 11-13-13. Membership required to view full article.

 

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

RELATED STORIES:

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!

“Invisible Disabilities Day Oct 24, 2013″ Proclaimed by Governor Hickenlooper

IDA Founder and President, Wayne Connell with Colorado Governor Hickenlooper

IDA Founder and President, Wayne Connell with Colorado Governor Hickenlooper

Denver, CO – October 14, 2013. We are elated to announce the proclamation of Invisible Disabilities Day on October 24, 2013. This day was brought into effect by Colorado Governor, John W. Hickenlooper.

It was requested by the Invisible Disabilities Association in light of millions living with illness, pain and disability. The Invisible Disabilities Association (IDA) is a non-profit organization, based out of Colorado.

Invisible Disabilities Day

Invisible Disabilities Day

IDA has been encouraging, educating and connecting people and organizations touched by illness, injury and disabilities around the world since 1996. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.

The Proclamation states:

  • WHEREAS, Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1996; and
  • WHEREAS, his reason was out of desire to educate friends and family about his wife’s debilitating illness and a passion for helping others; and
  • WHEREAS, millions around the globe are challenged by chronic and weakened conditions and IDA provides programs and paths for understanding; and
  • WHEREAS, IDA strives to encourage, educate and connect people and organizations touched by illness, pain and disability; and
  • WHEREAS, with the help of IDA, we may envision a world where people living with illness, pain and disability will be invisible no more;

Therefore, I, John W. Hickenlooper, Governor of the State of Colorado, do hereby proclaim October 24, 2013, as INVISIBLE DISABILITIES DAY.

Join the Invisible Disabilities Association on Invisible Disabilities Day for “It’s Not an Illusion!” October 24, 2013 at 6 pm the Denver Marriott South.

Invite your co-workers, friends, family, neighbors, community and medical teams for a thrilling evening for a great cause!

Table Sponsorships and Individual Seats available. More Information and Registration: http://www.ItsNotAnIllusion.com

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 1996. 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!

Ed Greene, CBS4 Weather and News Anchor to Emcee Awards Night

Ed Greene, CBS4 News and Weather

Ed Greene, CBS4 Weather and News Anchor

Press Release

Ed Greene, CBS4 Weather and News Anchor to Emcee Local Awards Night

Lone Tree, CO - October 10, 2013. Will are thrilled to announce that Ed Greene, CBS4 Weather and News Anchor, will be the Master of Ceremonies for the 2013 Invisible Disabilities Association Honor Awards Banquet on October 24, 2013 at the Denver Marriott South in Lonetree.

The evening will include nine IDA Award Recipients who are incredible individuals and businesses making a difference for people living with disabilities. Also enjoy exciting entertainment from Illusionists, David and Teesha Laflin, as well as a Silent and LIVE Auction and a delicious dinner and dessert with Honorary Chairs, Adrienne Ruston Fitzgibbons and Jack Fitzgibbons.

Ed is the senior member of Denver’s working media and has been a Denver TV Newscaster for over 32 years. Ed says he loves his job and Colorado’s always-changing weather. In rain, shine, sleet or snow, you’ll find Ed Greene on CBS4 newscasts at 5, 6 and 10 p.m. He also does weather for Denver’s KYGO radio.

Ed is one of the most recognizable and involved TV personalities in the community. In fact, he donates his time to emcee 60 to 70 events a year for local non-profit organizations and is a prominent figure at many local functions.

When asked about his involvement Ed says,

“I feel a responsibility to give back to the community. Doing that is what has kept me going all these years. The community has been good to me and in return I donate my time so that local non-profit organizations can raise money and awareness for good causes. I feel it’s the right thing to do.”

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 illness, injury and disabilities around the world since 1996. 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 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 1996. 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!

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

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.

7 Realities of the Invisible Becoming Visible with Wayne Connell: IDA Video Seminar

7 Realities of the Invisible Becoming VisibleInvisible Disabilities Association Founder and President, Wayne Connell shares 7 points about invisible disabilities and how to be a source of support to those who live with them.

This video is an excerpt from his seminar of the same name that he has given to various groups and organizations.

Wayne’s wife, Sherri lives with debilitating Progressive Multiple Sclerosis, Chronic Late Lyme Disease and Chemical Injury.

 

7 Realities of the Invisible Becoming V-I-S-I-B-L-E

V = Vast
I = Invisible
S = Society
I = Individual
B = Believe
L = Love
E = Everyone

Wayne Connell, Founder and President
Invisible Disabilities Association
http://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

Looks Can Be Deceiving

Kathe SkinnerBy Wayne Connell, Founder & President, Invisible Disabilities Association and IDA Executive Board Member, Kathe Skinner, LMFT

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me.  When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS,  so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

This article was first published on Disability.Blog by Disability.gov. July 25, 2012.

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances on Disability.gov

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 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.

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

TypePress Release

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

Parker, CO – January 03, 2013. IDA Founder, Wayne Connell is a regular Guest Blogger on Disability.blog by Disability.gov. We are elated to announce that IDA Made the “Top 10 Guest Blogs of 2012″ on Disability.Blog by Disability.Gov. We are thrilled to receive this recognition and to be given the opportunity to bring about more awareness and education about Invisible Disabilities!

Disability.Blog wrote:

2012 was an exciting year for Disability.Blog! We expanded existing partnerships and began dynamic new ones with leading disability organizations, such as the Invisible Disabilities Association (IDA). IDA President and Founder Wayne Connell and IDA ambassadors, including Kathe Skinner and Jeff Vankooten, wrote thoughtful posts throughout the year to let our readers know about the importance of recognizing and understanding invisible disabilities, and to offer people living with chronic illness and pain an opportunity to tell their personal stories.

Read full story.

Thank you to all of our guest CO-authors and readers who have commented and liked our blogs, showing your support for what IDA is doing!

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

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

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!

Join the Expedition

By Wayne Connell, Founder & President, Invisible Disabilities Association.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world! 

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

  • 2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.
  • 2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.
  • 2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.
  • 2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.
  • 2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.
  • 2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.
  • 2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.
  • 2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.
  • 2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.
  • 2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.
  • 2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.
  • 2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

In addition, check out our great expert chats on the first ever Online True Help® Disability Web Expo sponsored by Allsup, which will be held on September 27th. Register today for this free event. Topics include:

  • “Be Expedition Ready – Learn about preparing for the journey of care giving” by Antarctic Mike
  • “Ready, Set, Thrive – Nine new rules for engaging change and managing stress” by Jeff Vankooten
  • “7 Realities of the Invisible Becoming Visible” by Wayne Connell, IDA Founder and President
  • “Communication Do’s and Don’ts for People with Disabilities” by Kathe Skinner, MA, LMFT
  • “Humor for Health & Well-Being” by Karyn Buxman, RN, MSN, CSP, CPAE
  • “Your Changing Brain – The owner’s manual to your mind” by Rick Watson

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

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