Disability

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.

Being disabled 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. It is challenging to accept disability when you 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 affects not only my leg muscles but also the way I feel. I experience fatigue, brain fog, and weakness at different times every day.

I have yet to meet someone with MS or another disabling condition that peacefully accepts it. No one looks forward to getting their first cane or using a wheelchair for the first time. I can tell you that being 47 and needing more assistance to walk and manage simple errands just makes you 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 first hand. That was extremely difficult. Thankfully, most of my feelings were unfounded and for the most part people have been kind and accepting.

But 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 handicapped spaces? There are a lot sometimes but often not enough. It is very difficult to get a handicapped 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 Kroger in Willis 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 handicapped tag back then but I could have. I use them almost always now although I try not to if I have help or if I am staying in the car. A handicapped parking tag is easy to take advantage of.

Grocery store scooters- These are a necessity for me. I can usually get to the store ok 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 4 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. I’ll admit they are not something the store has to provide but I am thankful they do. So, 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.

Wheelchairs vs mobility scooters- I much prefer my scooter although I will use a wheelchair when necessary, around the house and on vacation. When I’m in my personal scooter I have a lot of people ask me about it and make jokes in a positive way. When I am in the wheelchair I feel pitied and sometimes invisible. Try being in a group where everyone is standing and you are sitting. Sometimes people don’t realize they are not talking to you or have accidentally blocked you from the group. I don’t know if people who are in a wheelchair full time feel the same way. I definitely get the sympathy vibe when people see me in the wheelchair for the first time. It is a lot easier using it around people I don’t know and it is useful in getting to the front of the line at a busy airport.

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 though and always being concerned and assuming someone is incapable. If I refuse your help and I am still struggling, you can gladly step in. Just don’t assume I need help all the time.

Purpose- People with limitations 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- I have written about this before but it’s worth mentioning again. No one wants to be defined by their disability or illness. Some people don’t like to talk about their problems and some do. I like when people ask questions. If you ask me how I am doing though 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 is a more meaningful compliment.

According to statistics about 12.6% of the US population has some type of disability. The level obviously varies from person to person but the fact is any type of disability can make life harder. Some people will refuse all and any assistance and that is ok. Some people are forced to accept assistance. I will admit that I do enjoy the perks of disability on occasion but it would never make up for the daily struggles of living with one. In my experience, 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.