by Erin Faulkner, Family Peer Supporter
December 5, 2023
International Disability Awareness Day was December 3rd. I have labeled myself as a person with a disability for many years. It is not a label that I use to get pity or to collect financial assistance. It is just how I am able to explain with one word that, though I am a successful, capable adult, I do have restrictions and limitations in some activities in my life.
A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions). A disabled person may not be handicapped if they can find a way around their disability. Often these are accommodations, but they may just be tools or strategies. Examples in these are hearing aids, braille, captioning, notebooks, phone apps, step stools, etc.
I have Stickler Syndrome, a connective tissue disorder, that affects my vision, hearing, joints and size. Due to my hearing loss, I have needed accommodations to allow me to access information, specifically communication. I wear hearing aids, use closed captioning on all tv shows and movies, and sit in the first few rows at any conference or meetings. I avoid situations and experiences that I am not able to experience the same as someone without a hearing loss. I don’t go to plays. I only go to movies that have open-captioning or use a close-captioned device. I avoid visiting with a large group of people.
I am very myopic, or near-sighted, in my left eye in which I wear a contact lens. My right eye has had a cataract repair and now has distance vision. Even with these corrections, I still only have 20/40 vision, or 20/30 on a good day. For the most part, my vision doesn’t limit my activities, though, the chance of it progressing is high due to glaucoma, cataracts and risk of tears and detachments.
Being only 4’10” isn’t extremely uncommon, but it does add to some of the limitations, such as driving some vehicles. The most annoying thing is trying to get things off of shelves in the store. As a side-bar, height restrictions have proven to be a little discriminatory at one store chain, in my opinion. Shoes are hung with small sizes at the top and large sizes at the bottom, so that the short people that are likely to wear the small shoes can’t reach them. I also require a foot stool under my desk at work, so that I can sit comfortably without aggravating my hips and knees.
Finally, my limited flexibility and joint pain have the biggest impact on my life. For example, my hip joints did not develop normally, so my walking gait actually goes against the direction my legs would want to move in the joint. This means that walking for long periods of time causes pain. It has been frustrating for most of my life to hear that exercise (stretching and strengthening) would help with my pain, but how can I exercise when it hurts? It was a vicious cycle that I experienced for years until I was finally given some medication that helped with the pain and allowed me to finally exercise and improve my joints, which in turn lessened my pain and allowed me to do more things.
As you can see, I do have some limitations, but only in a few areas of my daily life. I am able to work, drive, and take care of my family. I am successful and happy. My limitations are not excuses. They are simply reasons for me to look for other ways to do things that I want to do or find other things to do instead.
My 21-year-old daughter also has Stickler Syndrome. She is a very successful college student who already has a post-graduation job lined up as a chemical engineer. She has had a 504 plan since elementary school. Sam has only used supports as she has needed them. She has found that communicating with professors and employers has helped her bypass any limitations more than the accommodations she might ask for. Advocating for and accessing what you need to be successful is far different than saying “I can’t because…” Look for opportunities to succeed not for reasons not to. Your disability does not inherently make you disabled. Your attitude about it does. I have shared some quotes that may help you see yourself or someone you know differently than you had before.
“Ask many of us who are disabled what we would like in life and you would be surprised how few would say, ‘Not to be disabled.’ We accept our limitations.” – Itzhak Perlman
“We have the can-do factor, and us doing what we do inspires people to just try that little bit harder, whether they are able-bodied or disabled.” – Lee Pearson
“Know your limits, but never stop trying to break them.” – Kyle Maynard
“Your present circumstances don’t determine where you can go; they merely determine where you start.” – Nido Qubein
“Concentrate on the abilities your disability doesn’t hinder and don’t dwell on the things it interferes with. Be disabled physically, not in spirit” - Stephen Hawking.
“We all have weaknesses or disabilities that undermine our belief and confidence in our abilities. Embrace them as opportunities to grow.” – Aimee Mullins