My Thoughts on Disability
- Eliana O'Neill
- Feb 20, 2023
- 5 min read
Hello everyone!
I don’t post often but I wanted to share an exciting life update. A few weeks ago I finally got my first wheelchair! For those of you who I haven’t seen in a while, I have a type of muscular dystrophy (LGMD 2A/R1). I can still walk on my own, but sometimes I use assistive devices to reduce fatigue and keep me from getting injured in certain situations. This wheelchair is going to be so helpful to me and I’m so excited to see how my energy levels improve. I’d like to share a few thoughts about my experience with my disability. This is probably going to be a long post, but I hope that you read through and learn a little more about me and the disabled community.
First of all, these experiences are mine and mine alone. Disability affects everyone differently, so I while I can give insight on what it’s like to live with a disability, I can not speak on behalf of all disabled people. And if you’ve done any of the things that I’m about to mention, that doesn’t mean I think you’re a bad person! I didn’t have any specific person in mind when I wrote about any of these topics, so this is general knowledge and advice for people who want to be more inclusive of the disabled people around them.
No disabled person owes you their personal and/or medical information just because you’re interested. I’m generally very open to talking about my condition, but not all people want to share their life story. That being said, feel free to message me if you have any questions about LGMD or disability in general. I’d appreciate if you did a little reading on the subject before reaching out, but overall I’m just interested in starting conversations about the subject.
Just because you have a family member/friend/coworker with a disability does not mean you understand what it’s like. I know you mean well, but I don’t really want your medical advice. Trust me, my doctors and I are doing what is best for me, and what works for your loved one probably isn’t what I need, otherwise I would already be doing it.
Don’t be offended if a disabled person rejects your help. I’ll gladly accept help if it’s actually helpful, but more often people assume what I need and it ends up being more difficult than if they had just left me alone. Feel free to offer assistance, but if I say no, listen the first time. If I fall down, it’s actually harder for me to get back up if someone helps because they usually grab my hands, which I need to move my legs to the right spot to stand. So even though it might feel awkward to you to watch me stand up slowly, it’s what’s in my best interest.
No, I’m not “too young” or “too pretty” to have a disability. Yes, I’ve heard variations of these statements many times in the last few years as my condition became visible to the people around me. I’m young, pretty, and disabled. None of those words are mutually exclusive. I know that I may not look like your preconceived image of a disabled person, but that doesn’t mean that my experience is less valid.
Disabled isn’t a bad word! In fact, I would rather you call me disabled than “differently abled,” “handicapped,” or “special needs.” These terms are almost always said with good intentions but in reality tiptoeing around the word “disabled” makes me feel as if it is shameful to have a disability, and that no able bodied person wants to have a conversation about my life. Most disabled people that I’ve talked to feel the same way.
Walk with your disabled friends, not in front of them. This seems like a small thing but most of the time that I walk with groups I end up following several feet behind because I can’t keep up with my friends. I know this isn’t intentional, but it can feel very isolating. If you invite your disabled friend somewhere, make the conscious effort to include them in your activity.
Every day is different! My energy levels and ability vary from day to day, and I can’t always predict how I will feel on any given day. That means that some days I’ll have no problem walking, other times I’ll use a cane, or now I can use my wheelchair to get around. You can read about the Spoon Theory if you want a better idea of how chronic conditions affect people. If you see someone using a wheelchair stand up or walk around, that does not mean they don’t need the wheelchair! It’s very common for people with disabilities to be accused of faking. Now that I know how much work it takes to get a personal wheelchair, you can take my word for it and know that nearly no one would go through that process unless they needed it.
Speaking of how difficult it is to get a wheelchair, let’s talk about how expensive they are. My chair is relatively simple; it’s a manual chair with a small motor that attaches for when I’m traveling long distances or up hills. It cost over $21,000. That’s more than my car! Thankfully, I did not have to pay for it because I am lucky enough to be doubly insured, but most people who need wheelchairs aren’t able to afford them. As of 2018, only 1 in 10 people who need assistive products (wheelchairs, hearing aids, glasses, etc) are able to afford them. That being said, please treat people’s wheelchairs and other devices with extreme respect and caution.
In my opinion, one of the most important things that able-bodied people can do to be more inclusive of disabled folks is to notice when things aren’t accessible. If you’re walking down the street and see that the sidewalk is so broken that a person with mobility issues couldn’t use it, take note. When you’re in a multi-story building that doesn’t have a functioning elevator, mention it to whoever you’re with. If you go to a theater and the only way certain disabled people can enter is through the back cargo entrance, say something to the friends you came with. You don’t have to protest these businesses or bring it up to the manager every time, but simply noticing and showing others how inaccessible things are (even with the ADA in place) makes a huge difference to me.
I could probably write a short book about this, so feel free to reach out if you want to have a deeper conversation. Here are some links to articles that I think are interesting and useful.
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