IDA Makes Top 10 Blogs for 2014

IDA in “Top 10 Guest Blogs of 2014″ on Disability.gov

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 2014.”

We are thrilled to receive this recognition for the third year in a row! We are grateful to be given the opportunity to bring about more awareness and education about Invisible Disabilities! 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!

Imagine!

Alanna Wong

Alanna Wong

Imagine a world where people have the time to spend with, learn about, and empathize with people faced with an unforeseen catastrophe. Imagine a world where family and friends would unite to take challenges head on while supporting one another through the hardships of life. The synergistic effect of embracing “we” instead of “I” would create a place of belonging for all. Below, I will share four important keys to making the world a more empathetic place!

Mindfulness: The first approach in advocating for an empathetic world must take place from within by practicing mindfulness. We can better help each other if we live by the motto: “Our actions taken should be in the best interest of others.”

[Read more…]

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).

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:

[Read more…]

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.

[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.

[Read more…]

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:

[Read more…]

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.

[Read more…]

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

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.

[Read more…]

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.

[Read more…]

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.

[Read more…]

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 Skinner

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?

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

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.