10 Things I Would Tell You About Disability (with a Little Help from My Friends)


Kathy Bates

You can get proud.
You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud, or a doctor.
You only need more practice.
You get proud by practicing.

This stanza is from a poem by Laura Hershey entitled You Get Proud by Practicing. It was written to celebrate disability pride, which we’ll revisit soon.

This is my third post in my 10 Things I Would Tell You About Disability blog series. I always worry that these posts may seem a little like “The world according to Kathy.” So, this time I got a little help from my friends and colleagues John Fenley, Amy Frechette, Dr. Rosemary Garland Thompson, and Robin Carlson. I hope this blog post helps everyone see disability as diversity and not necessarily as a deficit or loss. I want all of us to be able to live proudly. As I have said many times before, I am not an expert on disability. I’m an expert on Kathy Bates.

1)  Disability pride what’s it all about?

The first Disability Pride parade was held in Boston in 1990 to celebrate the signing of the Americans with Disabilities Act (ADA), which protects the civil rights of people with disabilities. Every July we celebrate Disability Pride to embrace our disabilities as a natural part of human diversity, celebrate our talents, and fight ableism. We know that we are talented people who have a lot to offer our communities. And ableism (prejudice towards people with disabilities), like other forms of discrimination, is forever present in our communities. The only way to change this is through education and advocacy. Our diversity is beautiful, but so is what we have in common as human beings.

 

2)  Disability isnt always about loss it can be about gain.

The medical model frames disability as a loss or a deficit. In general, most of society views disability this way but, this could start to change, and I hope it does. Disability gain is a very new idea. It refers to the good things that come from a persons disability that would have been impossible or very unlikely otherwise. New skills are developed not despite a disability but because of it. This concept began with the deaf communitys use of the phrase deaf gain” rather than hearing loss. The more positive idea spread to the wider disability community, and now the term disability gain is becoming popular. For example, my friend John Fenley says he developed his talents as an artist when he was a child because he spent a lot of downtime in the hospital drawing while recovering from a brain tumor that left him visually impaired. Making a new friend who has lived experience with disability and who understands your challenges is also a good example of disability gain.

3)  Some disabilities are invisible.

Hidden disabilities, as they are also known, don't usually show up in ways that are recognized by others. This category covers many different types of medical conditions, including asthma, diabetes, visual and hearing impairments, mental illness, learning disabilities, chronic fatigue, fibromyalgia, and many others.

Invisible disabilities fall under the protection of the ADA if they limit one or more activities of daily life, just like any other more visible condition. According to the Invisible Disabilities Association (IDA), one of the most challenging aspects of having an invisible disability is that most people don't believe what they cant see and, this opens the door to discrimination.

Hidden disabilities are often not reported especially to employers. This means that employees who may need work accommodations, will not get them. Bosses should help ensure that workers are comfortable opening up about their medical conditions. The IDA suggests that a boss could encourage openness by sharing their medical conditions.

4) “People-First” and “Identity-First” are the most common and acceptable ways to identify disability in language.

For several years now, we have been debating over how to identify disability in writing and conversation. I have been using People-First language for about 30 years. This language identifies the individual separate from their disability, i.e. “I am a woman with a disability”. The idea is to distance the person from the negative stereotypes and stigma associated with disability (unfortunately, that goal has never been accomplished).

Identity-first language challenges all the stereotypes and stigma by directly claiming the disability. For example, some members of the disability community may like to say, “I am Autistic” because they feel that Autism is such a major part of who they are, and it affects every aspect of their lives. However, identity-first language is about more than pride. The principles of identity-first language fall in line with the social model of disability. This model states that disability is an interaction between a person and their environment. Disability occurs when the environment or systems are not set up to meet a person’s needs in a way that maximizes their full potential. So, I would say, “I have CP and am disabled by ableism and the lack of fair pay for the women who support me” --That was a mouthful! Disability refers to the lived experience of the individual. A person’s condition refers to a difference in the way their body functions.

I think that identity-first language gives us a strong connection to the disability community, and it should have a place in the political arena. For myself, I will use both people-first and identity-first language depending on the situation.

5)  Try to avoid outdated language that carries assumptions.

You may be a little confused about how to talk or write about disability, which is very understandable. However, you shouldn’t be afraid of asking questions or discussing issues on disability either. It’s important to remember that disability issues are community issues and can eventually impact everyone at some point. Here are a few suggestions to consider:

  • Try to avoid outdated phrases like differently abled, special needs (my needs aren’t any different from yours!), physically or mentally challenged.
  • Try not to use phrases that carry assumptions i.e., Kathy suffers from CP -saying that I suffer is a big assumption- and She is confined to a wheelchair. My wheelchair is not glued to my butt, and it gives me the ability to move about freely. Instead say, “Kathy has CP and uses a power chair to get around town”

6)  It’s a Myth that people who have autism spectrum disorder (ASD) are anti-social.

Amy Frechette is a friend and colleague; she has Asperger’s Syndrome. I asked her to dispel a common myth about people on the autism spectrum.

“People who have ASD have trouble with social communication, because of this it makes having friends and/or other types of relationships difficult. During a conversation with other people, there’s often a lot of emotion, shared interest, and body language all are parts of communication. Many times, people with ASD miss these subtle cues. Idioms such as calling the kettle black can be confusing for people who have ASD.

Regardless of these struggles, everyone wants to have friends and intimate relationships on some level. Making friends can be hard but can be achieved if one works hard enough. The best way to make new friends would be through a common interest, such as video games, sports, and Magic the Gathering.”

7) Take the time to get to know someone.

John Fenley is my friend and colleague. We have worked and advocated together for several years. I asked him to give my readers some advice.

“Some people like to judge others based purely on appearance . . . it’s just a fact of life. Everyone tries to combat this by wearing the hippest clothes and getting the trendiest haircut. But what if you can’t hide behind all that? What if the part of you that people judge the most isn’t your fault? What if it is the result of a disability?

People with disabilities may have a medical diagnosis to explain why they look or act the way that they do. But we don’t want to define ourselves by our weaknesses. There is more to who we are than how we look. And it would be a shame if everyone overlooked our talent and passion. It’s like the saying “don’t judge a book by its cover.” The same is true for us. Before you write us off because we look or act a little different, why not take the time to get to know us? We just may surprise you.”

 8) How we present ourselves is important.

I had the honor of interviewing Dr. Rosemary Garland-Thomson earlier this spring. She is a retired professor from Emory University where she taught feminist theory, American literature, and disability studies. I asked her why she wore so many pairs of funky glasses, just to get the conversation started. She said,

“I think it's very important for all people, but certainly people with disabilities, to engage intentionally in what I call dignity management strategies. I want people to understand me the way I want to be understood. Part of that is our uniforms or our costuming. The glasses make me look like the educator that I want to look like. And they also do the work for me by saying, “Look at my face. Stop staring at my hands.” My hands are very unusual. Teaching people who I am and how I want them to think of me and thus treat me, my glasses are part of the dignity maintenance strategies I put together.”

I know that the disability community can play a very significant role in eliminating the stereotypes that surround us. How we are seen by the public matters because disability is not seen as diversity or a natural part of the human experience like any other minority group.

9)  I may be a wheelchair user, but I take walks every day.

Occasionally when I mention to someone that I am going to “take a walk,” they wise-crack and say something like, “I would like to see that!”  So, I researched the definition:

Definition of Walk, (Verb): to advance or travel on foot at a moderate speed or pace.2. to proceed through, over, or upon at a moderate pace on foot. Synonym: Ramble, to wander about aimlessly--I do this all the time!

In baseball when a pitcher throws 4 balls the player at bat gets to “walk” to first base. In basketball, traveling is when you move the ball up the court without dribbling. This is also referred to as “walking” the ball. Someone once said that “Golf is a good walk spoiled.” As you can see none of these examples have much to do with walking at all. If you think about it, my wheelchair does a lot of the work that my feet would do. So, I’m going to keep taking walks.

10)  Universal design works for everyone.

My friend Robin Carlson is a Direct Support Professional. She says everyone should thank the disability community for making life easier with Universal Design.

Universal Design is the design of a product, service, or environment so that it can be understood and accessed to the greatest extent possible by all people regardless of their age, size, ability, or disability. Universal design allows for greater independence without the need for adaptation. Curb cuts are a perfect example of Universal Design.

Did you know Ed Roberts, the disability activist who was often called the father of the independent living movement, was also the driving force behind curb cuts? He and a group of friends who called themselves the Rolling Quads” poured cement on the end of several curbs to create makeshift ramps. They werent pretty, but the protest worked. On September 28th, 1971, Berkeley California was the first city to make it a policy for streets and sidewalks to be accessible in commercial areas. This led to the term curb cut effect which means when you design for the disabled it is a good thing for everyone. Curb cuts are not only good for people who use a wheelchair but people pushing strollers and people delivering packages.

 

From Where I Sit . . .

Coming up with ten topics for this blog took a lot of research and thinking. I learned a lot while writing this and I hope the same is true for you, my readers. I would like to end where I began this post. I’ve struggled with the concept of disability pride for a while now, asking myself “What should I be so proud of?”  I always say I don’t need to be fixed. It’s okay to be disabled. Which is why, I need to stop apologizing for my disability (like when I take longer at the bank due to their inaccessible counter). The world is not accessible…YET. I can’t change that I have a disability. When I apologize for the things, I can’t change; I become part of the problem. We can start breaking down the stigma of disability by learning to live unapologetically—something we all need to practice.

Author(s)

Kathleen Bates
Disability Policy and Training Specialist
Office: Institute on Disability, 10 West Edge Drive, Durham, NH 03824