Living My Life in the Grey Area of Disability

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When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism.

Ableism: Discrimination or prejudice against individuals with disabilities.

In the last nine months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as “able-bodied,” I never even considered the nuanced meanings of “disabled” or “abled.” I assumed that, like the other “isms” I’ve learned about or experienced, the categories were cut and dry. You were either “able-bodied” or you were “disabled.” I never imagined I would one day live in the grey area.

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On some days, I am undeniably disabled. I am in bed or, if I must go out, I’m in the wheelchair. On other days, I am walking on my own. That lasts for about six hours, then I crash. On most days, I am somewhere in between. I wake up feeling achy and tired, so I take my medication and monitor my stats. I drink a bottle of water and monitor my stats again. I concentrate on my breathing when I have to take the stairs. I position myself away from sharp edges in a room to ensure that a surprise syncope episode won’t result in cuts and bruises. I stand up slowly and brace myself against furniture or people around me, and sometimes I have to sit right back down and try again.

That is the grey area for me. I can walk and stand on my own, sometimes. I need a wheelchair or help from my loved ones, sometimes. This is how I discovered the ableism that is hidden in disability binarism.

Disability binarism is the idea that disability is black and white; you are either able-bodied or disabled. This simplistic thought processes is damaging to anyone who finds themselves in the grey area of disability, which is a huge portion of the disabled community.

Disability binarism leads able-bodied people to dismiss the experiences of disabled people if they see any evidence of ability. For example, this “oh-so-funny” meme that circulated the Internet as seen below.

A meme with the text "there has been a miracle in the alcohol aisle"

Disability binarism leads to uninformed assumptions about other people’s bodies and experiences. This meme is highlighting the idea that there must be a miracle for a disabled person to be able to perform a task that an able-bodied person can. The humor is in “catching” a disabled person slipping out of character. There is no concern for understanding in this situation. The idea that this person may use the wheelchair to avoid falling when overcome with syncope or to function with severe fatigue is foreign to the viewer if all they understand is disability binarism.

I have found that disability binarism is one of the biggest driving factors for the ableism I have experienced. I think that this is because I was once able-bodied and I have transitioned into a period of my life where I am now in the grey area. Those around me, weren’t always part of the transition so they do not understand my life in the grey area.

I use my chair a lot on my campus because it is the safer method of transportation. However, it uses a lot of energy to push myself, so when I can, I park my chair and I walk on my own. Seeing me in the chair one minute and then walking the next has confused a lot of people. I have heard everything from “I swear I see you in a wheelchair sometimes. What’s wrong with you?” to “Wow. I thought you really were crippled. You know, you shouldn’t pretend to need a wheelchair.”

Neither of these comments is OK. Although your questions might seem like innocent curiosity, there is a major aggression/accusation in the question “What’s wrong with you?” Let me set something straight here — you are not entitled to know how I became disabled. My appearance of a disability and then ability to function “normally” is not some mystery you are entitled to solve. Everybody has their emotional baggage that they must deal with; mine, unfortunately, is on display, and satisfying your curiosity at the expense of my comfort is not my responsibility.

Finally, let’s take a minute to realized that somewhere at some point, someone watched a disabled person stand up and reach for something in a store and, instead of politely offering assistance or just going on with their life, took a picture and made a joke out of it. That is ableism: witnessing a moment from a disabled person’s day, taking ownership of it and turning it into entitled entertainment for yourself.

Living with a disability can hard. Living in the grey area is hard for me. My day can be tainted with the fear that uninformed bystanders will dismiss the severity of my disability. If you see me walk today, will you doubt my need for my wheelchair tomorrow?

Woman in a wheelchair on a sidewalk

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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nike shoes showin air pegasus 32, nike flex ron and lebron solider ix

Nike Releases More Shoes for People With Disabilities

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Nike has released three more shoes with its FLYEASE entry system, designed for both kids and adults with disabilities. FLYEASE is a type of zipper that goes around the heel of the shoe. This makes it easier for someone to easily pull the shoes on and off.

nike shoes showin air pegasus 32, nike flex ron and lebron solider ix
Nike expands its FLYEASE offering to include the Air Pegasus 32 and Nike Flex Run along with the new LeBron Soldier IX

In July, Nike introduced FLYEASE on its Zoom Soldier 8 model, inspired by 16-year-old Matthew Walzer, who has cerebral palsy. Walzer wrote a letter to the company asking Nike to consider developing a shoe design for people who may have trouble tying shoelaces.

“My dream is to go to the college of my choice without having to worry about someone coming to tie my shoes every day,” he wrote, according to Nike. “As a teenager who is striving to become totally self-sufficient, I find this extremely frustrating and, at times, embarrassing.”

The letter made it into the right hands. When Tobie Hatfield, a Nike shoe designer, read Matthew’s request, he immediately got to work developing a prototype for a shoe Matthew and other people with disabilities could wear comfortably.

“When we say, ‘If you have a body, you’re an athlete,’ that means everybody,” Hatfield says in the video below.

Now, the FLYEASE technology is available on the Lebron Soldier 9, Pegasus 32 and Flex Run shoe models, too.

nike flyease for kids
Nike brings FLYEASE to kids across the LeBron Soldier IX, the Air Pegasus 32, and the Nike Flex Run

The LeBron Soldier 9 FLYEASE for kids and adults is available now in some markets and on Nike.com, and globally beginning March 15. The Pegasus 32 FLYEASE and the Flex Run FLYEASE for kids and adults will be available globally and on Nike.com beginning April 1 and May 1, respectively.

You can watch the story behind FLYEASE in the video below.

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To the Friend Who Felt I Was Selfish for Getting Pregnant When I Have a Disability

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My friend took one look at my stomach, then stared up at me in horror. It was a friend I hadn’t seen in over a year. Not quite the response you expect when you run into an old friend. I watched her expression turn from horror to anger. Baffled, I glanced down at my stomach. Was my shirt somehow offensive? Had I dropped food all over myself? What could possibly cause such a reaction? As I looked down all I could see was my 18-weeks-in-the-making baby bump.

The friend stormed over to me.

“You’re pregnant?” she demanded.

“Well, yeah.”

I still couldn’t figure out why that would be upsetting to her. Up until then, everyone who had found out had been happy and excited for me. I was delighted by the pregnancy, especially as my health conditions, medications and going through chemotherapy had dramatically reduced my chances of getting and staying pregnant in the first place.

“You are so selfish. You have rheumatoid arthritis and complex regional pain syndrome. Don’t you know they’re inheritable? How could you do that to your baby? Do you want them to be disabled? To be in pain like you?”

Her words crashed over me like a ton of bricks. The friend explained she had chosen to never have children, as she has a chronic and potentially inheritable condition. I listened to her reasoning. I understood her perspective. I also understood in that moment she was probably never going to appreciate my reasons for having this child. I tried to explain anyway.

I told her that if my parents had known I would end up with rheumatoid arthritis and complex regional pain syndrome, I would have still wanted them to have me. My life has value. I have value. Yes, I live with chronic pain and disability. I also have a life filled with wonderful people and experiences. I contribute to society. I am loved and love in turn. I would never deny a child those things, even it does mean they end up having to face what I’ve been through.

I explained that inheriting the RA and/or CRPS is hardly a given. The reality is that no one in my immediate family has either condition, yet I ended up with both. My child may never develop either condition, or they may get both or they may have something else completely. I will love that child fiercely and with every piece of me no matter how their life turns out. They will be perfect to me no matter what hand life gives them.

Finally, I told her that if my baby does end up with a disability then he/she will have best possible role model in life: me. I may struggle at times with my health conditions, but I have never been beaten. On more than one occasion I have defied the odds and achieved what I had been told was impossible for my body. My child may grow up with a disabled parent, but they will be better for it — not worse for it like my friend implied.

I conceded that I did have some fears for this baby, for their health and mine, for what the future might bring. Did it make me selfish that I became pregnant despite these fears? No. I felt it made me very much like any other parent out there who worries for their child and only wants the best for them.

As expected, my arguments did little to sway my friend’s mind. However, we’d both said our piece so there was nothing further to say. As she walked away though I saw her turn back for a moment and look at my growing bump. Not with horror or anger but with doubt. I looked back down at my bump with no doubt at all.

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Couple Cooks Up Plan to Help People With Disabilities Enter the Job Market

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Walter and Judy Gloshinski opened Smiling With Hope Pizza in Reno, Nevada, in January, and the business has already received an incredible response from the community. Not only has the demand for their pizzas been so high that they’ve run out of dough a few times, but they are aiming to turn their eatery into a place that offers people with disabilities steady employment.

“We did it because it needed to be done,” Gloshinski told ABC News. “There are no jobs out there for these kids.”

For the last two decades Gloshinski worked as a special educator opening businesses in California, Texas and Ohio with public schools that trained students with disabilities for competitive work, according to the Smiling With Hope Pizza website.

Gloshinski says the training process is thorough, but they try to tailor it around the needs of their employees. “We try to assess their skills, and place them in a situation where they can be successful and grow,” he told ABC News. “Right now one of our trainees likes to be in the back. She does all the dishes, puts together pizza boxes, and she does the garlic knots. The other trainee is a people person, so he is up front seating people, bussing tables and waiting tables.”

The Gloshinskis currently work with two volunteer chefs and two trainees with developmental disabilities, and they’re hoping to expand. Smiling With Hope Pizza’s ultimate goal is to “become a nonprofit and provide safe housing, pension plans, vacations, for our employees,” according to its website.

Beth Sullivan, chairman, International Down Syndrome Coalition told The Mighty:

“Contrary to common belief, hiring people with disabilities is actually good for the bottom line and improves corporate culture. Technology has eliminated or lessened many of the barriers that were previously faced by people with disabilities in the workforce. Any necessary workplace accommodations are low in cost and ultimately positively impact the workplace.

As more business like Smiling With Hope Pizza showcase the talents of these workers, more people with intellectual disabilities will find employment and more companies will take the chance at hiring them.”

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Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

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Now, children of all abilities can wear Tommy Hilfiger clothing.

A nonprofit organization called Runway of Dreams worked with the brand to launch an adaptive version of select styles from its children’s line, which will be on sale starting Tuesday.

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Two children, one with a limb difference, wearing adaptable clothing

Mindy Scheier, a fashion designer, founded Runway of Dreams to work with the fashion industry and adapt mainstream clothing for people with different abilities. She started the organization after her son Oliver, 11, who has a rare form of muscular dystrophy, asked her to buy him a pair of jeans. 

Mindy and Oliver Scheier
Mindy and Oliver Scheier, courtesy of Runway of Dreams

Oliver, then 8, came home from school and said he wanted to wear jeans to school the next day because his friends were wearing them. Scheier didn’t know what to do. She knew because of his mobility issues, pants with a button and zipper would present challenges, and the jeans would hinder his ability to wear his leg braces. But it was also a priority for Scheier to allow her son to wear the things he wanted, despite the challenges he might face.

“It was more important to me to have him walk into school with his head held high than to worry about the other things,” Scheier told The Mighty. “That was when I realized a change needed to happen. Every kid and adult in the differently-abled community deserves to wear the same clothing that everybody else does.”

Three children, one in a wheelchair, wearing adaptable clothing.
Tommy Hilfiger // Credit: Richard Corman

Scheier got to work looking for adaptable mainstream clothing, but soon discovered not many options existed. So she began buying clothes off the rack and modifying them to suit Oliver’s needs. 

She then started assembling focus groups to get a feel for what kinds of clothing needs the community as a whole had. Based on issues the people reported with most pieces of clothings — like difficulty with zippers, pull-over style sweatshirts, etc. — Scheier began developing wearable technology and designing modifications that would allow people to self-dress.

Two children, one in a wheelchair, wearing adaptable clothing.
Tommy Hilfiger // Credit: Richard Corman

Realizing the extent of the market for this type of service, Scheier began to think about what brands would be best to pioneer the movement. Her crusade eventually led her to Tommy Hilfiger.

“They’re a brand that caters to the family unit and their clothing goes from children all the way up to adults, but also they have a very big affinity for philanthropic movements,” Scheier told The Mighty. “I felt comfortable they were going to understand.”

A child wearing Tommy Hilfiger adaptable clothing
Tommy Hilfiger // Credit: Richard Corman

Based on her research, Scheier has modified the Hilfiger collection in three main ways.

The first is closures: buttons and zippers have been replaced with a special stylish magnet closure called MagnaReady®. The second is the adjustability of the clothing: pant legs, sleeves lengths and waistbands are adjustable because the sizes needed for seated comfort differ from standing. Third is the ways in which a person can get in and out of the clothing: pull-over style clothing can be difficult due to low muscle tone, limb differences or other disabilities, so the seams have been adjusted to allow for the clothing to be entered through the back rather than over the head.

All apparel is still from the mainstream Tommy Hilfiger spring collection. 

MagnaReady closure.
The MagnaReady® fashionable magnetic closure system for people with limited mobility.

“As far as I know, this will be the first mainstream, big name brand to offer an adaptable clothing collection,” Scheier told The Mighty. “This will be a huge initiative in the fashion industry that will truly be innovated by Tommy Hilfiger.”

Scheier says Runway of Dreams isn’t done yet. Her organization won’t stop until as many brands as possible are offering adaptive versions of their clothing.

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Tommy Hilfiger // Credit: Richard Corman

For Scheier, it’s a passion project born out of love for her son. He has seen it from the beginning, with Scheier ripping apart clothes on the kitchen table, all the way through the final photo shoot for the collection, in which he’s a model.

Boy wearing adaptable clothing.
Oliver Scheier. Tommy Hilfiger // Credit: Richard Corman

“It’s an amazing thing for him and my other kids to witness this journey and show them that you can make a difference and if you believe in something, you can make it happen,” Scheier told The Mighty.  

Check out the video below, by Helen Polise, for more on the collection and the children modeling it. 

Visit the website here to browse the collection.

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Parents ‘Disgusted’ After Quadruple Amputee Son’s Disability Was Questioned

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Edward Bright’s arms and legs were amputated when he developed meningitis as a child, and after his 16th birthday last month, Bright began the process of switching from the U.K.’s Disability Living Allowance (DLA) benefit system to Personal Independence Payments (PIP), according to the Mirror. However, rather than a seamless transition, Bright’s parents were furious when the U.K.’s Department for Work and Pensions (DWP) notified the family that Edward would lose his benefits if he failed to attend an assessment meeting at the DWP’s office in Derby, England.

“They wanted him to go to Derby and even gave instructions on how to walk to the office from the station,” Edward’s mother, Clare Bright, told the Mirror. “He’s in a wheelchair waiting for an operation in April. He can’t walk. It’s a shamble.” After receiving the notice, the family demanded a home assessment, but was still furious with the response, which asked about Edward’s work prospects and daily life.

It’s­ absolutely disgusting,” Edward’s father, Steve Bright, added in an interview with the Mirror. “He’s a quad amputee for God’s sake. It isn’t like he’s going to get better. He isn’t going to suddenly grow new arms and legs … They know full well the extent of his disabilities. They have no hearts.” Edward’s story is featured on the cover of the Feb. 18-edition of the Mirror, and hundreds of readers have reacted on the publication’s Facebook page:

 

“It’s absolutely disgusting.” Posted by The Mirror on Wednesday, February 17, 2016
 

To add insult to injury, Clare Bright says the family was told Edward would be given interim payments while being assessed, but he has yet to receive them, according to the Daily Mail. Officials have since admitted to making a “mistake,” adding that the letter should not have been sent in the first place and that the case will be resolved “imminently.” A DWP spokesperson said in a statement to the Daily Mail, “In this instance a paper-based assessment has been completed and there is no need for a face-to-face assessment.”

“There should be a mark on his case saying, ‘He is disabled and always will be – don’t contact him for assessment,’” Steve Bright told the Daily Mail. “It should get to the point where, with certain disabilities, there are no questions asked. I can see why they have to do these assessment, because of the amount of people who falsely claim benefits. Sadly, it’s people like that make it a lot harder for the genuine cases.”

In 2013 the DWP introduced the Personal Independence Payment (PIP), which replaced the Disability Living Allowance (DLA) benefit system, and there have been countless complaints ever since. In June 2014, the Public Accounts Committee described the implementation of PIP as “nothing short of a fiasco,” according to The Independent on Sunday. In an article published in August 2015, the publication reported nearly 25 percent of people applying for disability benefits are encountering “serious difficulties,” including delays, unfair dismissal of claims and confusion over eligibility.

 

Tomorrow’s Daily Mirror front page:Prove you are… Posted by The Mirror on Wednesday, February 17, 2016

Correction: A previous version of this article referred to Bright as a quadriplegic. Bright is a quadruple amputee.

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