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My Insider's View as a Person With a Disability

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handicap, disablement, incapacity, impairment, infirmity, defect, abnormality; condition, disorder, affliction.

invisible, flawed, different, unhappy, pitied, less than, misunderstood, judged

kindness, empathy, curiosity, understanding

The first line at the top lists synonyms for disability. The second and third lines list adjectives that someone with a disability may feel at any given time. Whether you view those adjectives as true or false, right or wrong, they can be real. I have felt all of those things at different times.

Disability is not something most people hope for. Some people are born with a disability and don’t know anything else. Others acquire it later in life. I have found it challenging to accept disability because I know what living without it is like. Today I am writing from my perspective. My thoughts do not apply to everyone. There are many people who have a disability and manage life better than those without. I experience disability from the perspective of someone who experiences a gradual worsening of the physical body. This can also be true for mental abilities like with Alzheimer’s disease, but thankfully my mental capacity has largely remained unaffected. My disability from multiple sclerosis affects not only my leg muscles, but also the way I feel. I experience fatigue, brain fog, and weakness at different times every day.

Being 48 and needing more assistance to walk and manage simple errands makes me feel old. I felt ashamed and judged the first few times I used a scooter at the grocery store. I felt embarrassed to show up at school in a wheelchair. People who have known me for years as an active, healthy person were now seeing my disability firsthand. That was extremely difficult. Thankfully, most of my feelings were unfounded and for the most part people have been kind and accepting.

Now I am grateful for the extra assistance that makes life easier, and I am also very aware when assistance is not available. Hopefully by sharing my perspective and addressing some common topics, I can help shed some light on the needs of people like me, who want to make the most of their limitations.

Parking — Have you ever wondered why there are so many disability spaces? There are a lot sometimes, but often not enough. It is very difficult to get a spot at a hospital or doctor’s office. Fortunately many hospitals have addressed this and offer free valet parking. I have been guilty of driving around the grocery store a few times to find one. It is easy to judge someone who gets out of the car and appears perfectly “normal.” Some disabilities are invisible. For a while my issues were not visible. I did not use a disability tag back then, but I could have. I almost always use one now, although I try not to if I have help or if I am staying in the car.

Grocery store scooters — These are a necessity for me. I can usually get to the store fine with my cane, but after that the scooter is a must. Several times I have had to search for a working or charged scooter. Just the other day I tried four before finding one that worked. It started to die on the way to the car, but I was able to get it out of the way. These scooters are utilized by many and help disabled people maintain independence. If your kid wants to try one out or use one just for fun, remember there may be someone like me looking for one out of necessity.

Kindness — Holding the door or the elevator or offering your assistance is much appreciated. Usually I say I don’t need help, but sometimes I really do. There is a fine line between offering help and assuming someone is incapable. If I refuse your help and I am still struggling, you can again offer to step in. Just don’t assume I need help all the time.

Purpose — People with disabilities want to help and be involved just like everyone else. It is important to include them in some way. I am pretty good at putting myself out there, and try to volunteer for things I think I can manage but not everyone is. Offer a task to someone you think will be appropriate.

Friendship — It is not always easy to know how to be a friend to someone with a disability. Always extend an invitation, let them refuse if needed, and don’t take it personally. Make a point to visit them at home during bad times or schedule a get-together you know they can handle. I love getting together for lunch or dinner or at someone’s house. Sitting and talking is a great way to connect and forget about all the other stuff going on.

Conversation — No one wants to only talk about their disability or illness. Some people don’t like to talk about their problems, and some do. I like when people ask questions. But if you ask me how I am doing, I will probably give you the standard answer, “fine” or “good.” If you really want to know what’s going on, ask a more specific question. Even something as simple as “how are you feeling this week?” lets me know you are interested in a more detailed answer. My condition fluctuates every day, every week, every hour, so it is hard to give a short answer to how I am feeling. How I look is not always a reflection of how I feel either. “You look good” (head tilt), tells me you think I am supposed to look sick. “Your hair looks pretty today” or “I like your shirt” are more meaningful compliments.

According to statistics about one in five people has some type of disability. The type obviously varies from person to person, but any disability can make life harder. Some people will refuse all and any assistance and that is OK. Some people have no choice but to accept assistance. I will admit I do enjoy the perks of disability on occasion, but it would never make up for the daily struggles of living with one. I am thankful for the progress that has been made in our country that allows people with disabilities more opportunity to lead a productive, independent life.

This story originally appeared on Stronger Than My Fears.

Getty image by Yassiel Nunez.

Originally published: April 24, 2018
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