“There is no greater disability in society, than the inability to see a person as more” - Robert M. Hensel
Thirty years ago, on July 26, 1990, a major grassroots effort ignited the disability rights movement resulting in the signing of the Americans with Disabilities Act (ADA). The act, which protects the civil rights of people with disabilities, allowed many of us to participate in our communities, hold jobs, and develop relationships for the first time. Sometimes I think things have changed a lot since then, and other times I think things haven't changed at all, or not enough. In August of 2019, I wrote a blog post entitled 10 Things I Would Tell You About Disability. I have always had a strong need to advocate for change, not only for me but for the wider community, and writing this blog gives me that opportunity.
So, here are 10 more things I would tell you about disability, and as I mentioned in the first post, I am only an expert on Kathy Bates, and even though I'm just 4'10", I've never been short on opinions.
1. Nothing about us without us
These words have been chanted by many groups that have been denied access to community life. The phrase is most widely known as a mantra for the disability rights movement. It symbolizes the fight for self-determination and self-empowerment. I mention it now because some people with disabilities still have to fight to make their voices heard. Occasionally, I still need to advocate for myself to be included in meetings that directly affect my life, even as a fully capable adult. Parents need to remember that learning to make decisions is key to becoming as independent as possible. Starting from the beginning of their educational journey, students should become increasingly involved in their own IEP process as they get older.
2. Sometimes I feel invisible.
I felt this way recently when I was visiting my new dentist's office. The receptionist came out from behind her giant desk and into the waiting room, walked right up to the person who drove me to my appointment and said, "I assume you are going to fill out these papers for her." She didn't even address me by my name.
I quickly said, "she is my driver and knows nothing about my health. You said that you would send me these forms to fill out before my appointment. That didn't happen." This is not the first time this has ever happened to me and when it does, I am never shy or quiet. When people with disabilities need a personal assistant in the community or get to their appointments, they need to be acknowledged—especially when they are the customer. Someone may ask a question about me and direct it towards whoever I'm with. They may ask, "Why is she in the chair?" or, "Where did she get her van?" and "how much does it cost?" I quickly jump in and answer the question because I want them to know I can speak for myself. Therefore, I think it is a good idea to interact with people independently in my community. My personal assistants are good at not speaking for me, especially when we are out together.
3. Developmental age is ridiculous and life experience matters
Every time I hear someone say something like, "he's a 6-year-old boy in a 30-year-old man's body" or, "she's 16, but she has the mind of a 4-year-old" I want to scream. I don't believe there is any accurate way to measure anyone's intelligence. When referring to developmental milestones, the experts are usually only talking about physical abilities such as crawling, walking, talking, skipping, tying one's shoes, etc. (by the way, I can't do most of these things). So, by this measure, I would have the developmental age of a two-year-old. Our life experiences play a huge part in our ability to adapt to the world. Vacations to new places, hands-on work, and new educational opportunities are just a few examples of learning experiences that often have more impact on development than traditional classroom curriculum.
4. Choice and control are important for everyone, no matter how much support they may need
Life, liberty, and the pursuit of happiness are basic human rights laid out for us in the Declaration of Independence. Happiness would be nearly impossible to achieve if we had no choice or control over our own lives. While some people need more help than others to make decisions, it is a skill that should be developed and encouraged. Learning to advocate for our own needs and say "no" when we feel uncomfortable are skills for developing an independent spirit. My definition of a "good life" is a life that is full of choices, rich experiences, and positive relationships.
5. Accessibility is more than just ramps
While no one appreciates a great parking spot or well-designed wheelchair-accessible bathroom more than me, accessibility is a lot more than that. It is creating environments, products, and services that are universally designed for use by many different population groups, regardless of age or ability. Communication Access Real Time Translation (CART) and sign language interpreters are services often used by individuals who are deaf or hard of hearing to receive important information (i.e., Coronavirus updates). Access is providing written materials in plain language and alternative formats when needed. Documents should be written for use with computer technologies such as screen readers. Presentations and media should utilize closed captioning. Images used for products, such as brochures, should include people with disabilities depicted positively. So, you see, accessibility is much more than physical access—it requires a willingness to accommodate and include everyone. None of that matters however, if you are not willing to speak up and let someone know what you need.
6. I don't always feel disabled
I know, you're thinking, "Sure Kathy, how can that be true?" Well, there is more than one way to interpret disability. The medical community often sees me as a patient who they need to cure. I enjoy reminding them that I am not broken and I don't need to be fixed. I feel disability should be seen as diversity. The medical model depends on having a diagnosis to work. This is important because without a diagnosis, we can't get the treatment we might need. Also, it would be impossible to get cool assistive technology to maximize our independence. Equipment like my power wheelchair, my van, or even a service animal would not be available to me. I need to be healthy, and I am. I rather think about disability as a social construct.
With the Social Model, disability is seen as a complex interaction between a person and their environment. When the environment is not accessible or set up to allow an individual to function to the best of their ability, then disability becomes a much bigger issue. I like this model because it emphasizes the importance of accommodation and accessibility, and the responsibility falls on society. For example, my house is very accessible, in fact, it is tailored to my specific needs. This means I am more independent in my own house than I could ever be in anyone else's. I can get in and out of my house independently. I can get myself a snack and something to drink. I love doing my dishes. I can get in and out of the shower. I can also work from home, and since my bed is adjustable, I can read at night, etc.
I am not saying that my disability disappears just because I have a totally accessible house. I'm making the point that my disability is not such a big deal when my environment works for me. That's why I can say, "I don't always feel disabled," and there is freedom in that.
7. Using a wheelchair has its advantages
I'm not saying that using a wheelchair is always a blast; it can be tough on my body. It can be difficult to change my position, but being a wheelchair user does have its advantages. Here are a few examples I can think of off the top of my head.
- I never have to look for a place to sit when I enter a crowded room.
- My shoes and sneakers never wear out. In fact, I have an old pair of work boots that are about a quarter of a century old.
- If I take a vacation and go to Disney World, I never have to wait in line.
- I've been literally picked up by some really strong and great looking men!
All jokes aside, having a disability isn't always doom and gloom.
8. The importance of friends, mentors, and peers cannot be overstated
Of course, this is true for everyone, regardless if they experience a disability or not. It can be more difficult to foster friendships when you have a disability. For example, if you have a communication challenge, meeting new friends and initiating conversation can be difficult, but it's worth the effort because loneliness is a much bigger issue than disability. Mentors are important because they often are able to use their significant life experiences to show someone else with a disability what is possible and challenge their assumptions. Mentors and peers also make great sounding boards that can help people with disabilities come up with unique solutions for navigating everyday life. Having relationships with people with and without disabilities is important because friendship is important. Certain issues come up in life that can only be discussed with someone who understands where you're coming from. I've had many mentors and have also taken on that role myself. I was eight years old when I met my first mentor, Sally, a young woman with Cerebral Palsy. She was the first adult I ever met with a disability. Her body resembled mine in many ways and she also had significant challenges with speech. Despite these challenges, Sally was a speech-language pathologist. I asked her once how she could be a speech therapist. She said, "I'm very good at all those initial sounds and no one understands better than me about what makes it difficult to speak well." I knew after that conversation that I could grow up and do anything I wanted to do.
9. A disability doesn't make me special
Did you know 1 in 5 adults, 18-64, self-report having a disability in New Hampshire? So, having a disability isn't really that unusual. Yet, I can be doing the most common activity, like grocery shopping or waiting in line at the bank, and someone will come up to me and tell me that I am inspirational or brave. I know that they mean well, but they don't even know me. Get to know me first. If I do something remarkable that inspires you, like making the bestseller list or saving someone's life, it would be much more appropriate and easier for me to accept the praise. No one should be seen as an inspiration just for living their lives the best way we know-how.
10. No one lives independently
We need each other. Whether it's special education, physical therapy, occupational therapy, or speech therapy, independent living is always the goal. I don't think anyone can live totally independently. It would be more correct to say as humans we live inter-dependently. Whether it's the barista at Starbucks, who makes your coffee all week long, the plumber, your brother or sister who helps you with the groceries, or a direct support professional—relationships are important, and we need to support each other.
The South African concept of Ubuntu is both a greeting and a way of life. Some of the basic values that are part of this philosophy are love, truth, peace, inner goodness, social justice, trust, and eternal optimism. These traits are inherent in all of us because we are human. It has many translations, but it is commonly known to mean "I am because we are" or "I am able because we are able.” This concept is important, especially for the disabled community, because my ability to contribute depends on someone else's ability to support me. However, it goes both ways, as I am supporting them as well; it's a mutual relationship. We need to remember, especially during this health crisis, that this connection between all of us is the thing that sustains us, and this is truly something to be thankful for.
From where I sit…
We have a long bumpy road to travel before breaking down the stereotypes and stigma surrounding disability. Fear of what we might not be able to relate to always seems to get in the way. My hope is that young people with disabilities will see that the best way to make things change is to believe that they can change, and we can all have a role in it. I use this blog to educate and I want to encourage good enthusiastic conversations about the issues I discuss. Most of all, I really need people to see that we are all much more than our labels. I am incredibly grateful for the opportunity to share my thoughts and truths about living with a disability.
