Redefining Disability Challenge – Question 25

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty fifth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?

Media representation of disability plays a role in how the public perceives disability and life with disability. Media portrayals of disability can help promote or dispel stereotypes. Commercials, movies, television shows, radio programs and podcasts can educate, but not unless they reach a wide audience. Rather than tackling this question head on, I’d rather talk about disability stories I have encountered this past week.

I tried to pay closer attention to the media over the past week, knowing I would be writing this post. I follow several blogs and social media sites which promote disability related stories, so I recognize I may read and hear about topics which the nondisabled do not.

For instance, yesterday I read about the “disturbing video” released by the American Civil Liberties Union (ACLU) showing an 8 year old boy with attention deficit hyperactivity disorder (ADHD) being handcuffed by his school’s resource officer. I have not watched the video, but the New York Times reports the video shows the boy crying as the resource officer places him in handcuffs and tells the boy, “You don’t get to swing at me like that.” The ACLU is filing a lawsuit against The Kenton County (Kentucky) Sherriff and the deputy sheriff involved in the incident. The lawsuit also describes another instance where the officer handcuffed a 9 year old girl twice behind her back by her biceps. Both children were punished for behavior related to their disabilities. Thankfully, neither child was arrested. Nor did they receive criminal charges.

Monday I read an article about the Ms. Wheelchair America Pageant,  held last week in Des Moines, Iowa. Full disclosure – I am a past Ms. Wheelchair titleholder and served various roles on the Ms. Wheelchair America Board of Directors between 2003 – 2012. So, I follow the media for stories about the organization. This article described the pageant in a very positive manner without objectifying the participants. I hear your skepticism -an article about a pageant which does not objectify the titleholders? Yes. Go read it for yourself, and then congratulate Dr. Alette Coble-Temple, the new Ms. Wheelchair America 2016, who’s advocacy platform is parental rights include disabilty equality.

Speaking of parental rights, last week an online friend shared an article from May about parents with disabilities fighting to keep their children. The article, which appeared in Al Jazeera America, described the legal struggles of women with disabilities trying to maintain custody of their daughters. I have several friends with disabilities who are parents and who have encountered negative attitudes, doubts and legal challenges. I read an article in The Daily Beast which stated here in the United States, disability may be used against a parent in a custody case in 37 states.

Monday morning I heard a story on NPR’s Morning Edition about the 2015 Special Olympics World Games. For the first time, some of the events were televised live on ESPN. Did you know a world record was set at these games? Jackie Barrett, a power lifter from Canada, known to his fans as The Moose, set a new world record in power lifting – in all of power lifting, not only lifting performed by athletes with disabilities.

Last week I also watched the first episode of a new BBC3 television program called Wanted: A Very Personal Assistant. The show matches young British job seekers with employers who are searching for Personal Assistants to help with their personal care. Yes, it is a reality show and I know some of these matches may have been set up for good viewing. The potential Personal Assistants don’t know they are applying for a job involving personal care for people with disabilities, which causes some interesting interactions. But the show does a realistic job of illustrating the difficulty finding a “carer” who is capable, reliable and a good fit for your personality and lifestyle. It also demonstrates some of the mistakes Consumers who are new to self-directed care can make, such as hiring a Personal Assistant because you think he or she will help you meet dates. If you are in the United Kingdom, you can watch the show on the BBC iPlayer. If you are not, you can watch the first episode and second episodes on YouTube here and here.

I have social media connections with other people with disabilities who have begun their own media projects to help promote positive views of disability. One of the reasons I am completing this blogging challenge is to tell my own personal story related to disability.

The media and our culture often portray disability as negative, something to be cured or avoided, a cause of diminished quality of life. But that is not the life I know.

I am proud of my difference. It makes me unique. It affords me opportunities I might not otherwise be offered. My disability has taught me optimism, patience, empathy and grace. Because I am physically unable to perform basic tasks without assistance, I am able to offer employment to those eager to work. My wheelchair connects me to others who navigate the world with what some nondisabled might consider an alternative point of view.

Life has challenges for everyone. My disability is visible and often perceived by the nondisabled as the main obstacle I face. However, the real obstacle is the negative attitude held by those incapable of recognizing my capabilities and value. The barrier is not the flight of steps at the front of a building but the architect who failed to consider my needs when designing a public space. The limitations to my economic independence are the antiquated rules which require me to live without resources in order to obtain necessary home care.

I appreciate realistic media portrayals of daily life for people with disabilities. We are a diverse group, and each of us has a unique story to tell. I am most impressed when people (with or without disabilities) tell their own stories, in their own words, in a way natural and comfortable to them.

To that end, I encourage you to read other blogs written by people with disabilities or related to disability issues. If you don’t know where to start, try some of these. This list is not exhaustive by any means, but should be considered a starting point.

Words I Wheel By

Disability Thinking

Curb Free with Cory Lee

Smart Ass Cripple

Carly Findlay

Disability Visibility Project

Comfortable in My Thick Skin

Health on Wheels: The Journey to a Better Me

Dominick Evans

A Little Moxie

Let’s Queer Things Up

KDub155

How Did We Get Into This Mess? On Language and Power

 

Do you revommend a blog I accidentally left off this list? Please share it in the comments below!

 

 

Redefining Disability Challenge – Question 22

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty second question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?

I have been asked to speak to people with new injuries or those newly diagnosed with disabilities requiring use of a wheelchair. It is important for them to hear a message of hope, to see life doesn’t end just because they now use wheels for mobility. It is possible to have a full, active life even with a disability. Attitude plays a critical role in a person’s ability to adapt to a new disability – well, to most of life.

I find it more important to speak to parents of children who have been diagnosed with neuromuscular diseases like mine. I regularly speak to parents affiliated with my local office of the Muscular Dystrophy Association (MDA). While I may not agree with the organization’s history of inspiration porn-filled Telethons, I believe it is crucial for parents to see and hear from independent adults who happen to have the same medical diagnosis as their kids.

I enjoy speaking to parents because too many times, parents are given information about disability in a medical setting. This means they hear things like:

Your child will never walk like a “normal child.”

Your child will be “wheelchair-bound.”

While your child should have a normal life expectancy, he will always rely on others for personal care.

* Language rant: What exactly is a “normal child?” Why is a child NOT normal just because he or she happens to have a disability? Why do medical professionals continue to use this language, which implies any child with a disability would not be as worthy as a nondisabled child? I may not be normal, but I promise my use of a wheelchair is the least of the reasons why I could be considered abnormal!

Back to topic…I am not a parent. I have never carried a child in my womb for nine months, dreaming of what is possible. I have not watched my infant while thinking, “Something just isn’t right here.” I have not had to watch medical professionals poke and prod my child, causing pain in the hopes of finding a diagnosis.

And while I have never experienced those events as a parent, I have forty one years of experience as a patient in a medical system which demonizes disability as something bad. I have heard well-meaning doctors and medical professionals say the following to my parents:

If you’re lucky, she won’t need a wheelchair for several decades.

It’s important that she walk as much as possible, even if she complains of pain.

Her ability to walk must be preserved for as long as possible.

How is a girl supposed to develop a healthy self-esteem as she transitions to using a wheelchair for mobility having heard comments such as those all of her young life? I attribute my attitude and my success to my parents, and I am not the only adult with a disability who feels this way.

In March, I was one of four keynote speakers (all of whom happened to have a disability) at the Rotary District 9830 OneCare District Conference in Tasmania, Australia. Each of us had different messages, but we all mentioned the importance of family support in our abilities to excel in our chosen endeavors. The three of us with life-long disabilities spoke about our parents, and the benefits we gained from having parents who let us fall, scrape our knees, fail, and get back up again.

When I walked, I had a very pronounced side-to-side gait. My balance on uneven surfaces like grass or a steep incline was tenuous. I fell all of the time. Eventually, I learned how to fall. Friends described it as watching someone crumple in slow motion. Thankfully, I never broke anything other than my eyeglasses – even when I fell with my violin in my hands.

My parents could have protected me from falling. They could have prevented me from going outside and playing in the yard with my friends. They could have kept me home from the field trip to the New York State Museum in elementary school when I fell and got a bloody nose as we boarded the bus. They didn’t have to let me go to MDA summer camp three hours away from home every summer for eight years. They could have stopped me when I left home at age sixteen to be an exchange student to Australia.

Instead, I learned everyone falls from time to time but you can pick yourself up again with help from those around you. I found creative ways to engage with my peers. I discovered I had endurance and stamina. I became skilled at telling other people how to best assist me when I needed help.

Parents need to let their children with disabilities explore their world, in whatever way they can. They need to help their children become strong advocates by involving them in their medical and educational decisions when appropriate. Parents are often hesitant to let others become involved in caregiving for their children. How else do they develop the skills needed to become self-directing adults?

I tell my story to parent groups not to make them feel bad about what they are doing as parents, but to encourage them to think of possibilities. How different my life would be now if I didn’t have parents who looked beyond a medical diagnosis and let me be a person.