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Disability Is a Spectrum

When we think of the word “disabled”, there are a lot of specific imagines that come to mind. A lifetime of absorbing media without actually knowing anyone who is disabled can bring forth an image of someone who is wheelchair-bound and requiring the help of others for the most minute of tasks. The reality is far different than that stereotypical image that is portrayed everywhere. The fact is, disability is a spectrum, with an enormously wide range of appearances and capabilities.

Ignorance and misconceptions around disability

There are so many misconceptions out there about what it means to be disabled. These incorrect views often come in to play with regards to what one sees. If there is no wheelchair, how can they be disabled? They look fine to me, they must be scamming the system for money and a parking space! Such is the ignorance that many who are disabled have to deal with. I’ve even read that the United States’ current executive branch wants to monitor the social media of those who are disabled, you know, in order to see if they are having too much fun. Once again, the current administration is showing that it’s far from knowledgeable when it comes to the topic of science and medicine (not to mention humanity). What hope do the disabled have when it comes to the everyday citizens of the world when people at such a high level can display such ignorance when it comes to the topic?

Disability is more than a wheelchair

So, I am here to remind everyone that being disabled doesn’t mean you have to be in a wheelchair. If you are in a wheelchair, it doesn’t mean you need it 100% of the time either. Many people who use wheelchairs can stand and walk for short periods of time. Just like I require a cane, but don’t need it if I am going short distances. Aside from that, people need to get away from the fact that being disabled is about more than walking and mobility. It’s about cognitive impairment, fatigue, pain, vision, and speech. It’s about any function the human body can normally do, but because of injury or illness, no longer functions. I am disabled, but I do not look it, and like many, I try hard to not look or act disabled.

I am 41, a man, I have a big and long beard, I drink beer, and I even laugh and smile. I’m not at all what people think of when they think of someone being disabled. Yet, I am in pain constantly, fatigued to the point I can barely move, my arms and legs have trouble working at times, and my short term memory is a disaster. All things that you would never see by looking at me. I’m such a mess inside that when I was forced onto disability, I was immediately accepted. Something that is so hard to do, that there are those that are in wheelchairs 100% of the time that don’t get accepted on the first try. Yet, if you were to judge my social media alone, you wouldn’t understand that. Chances are, you wouldn’t get it even if you spent some time with me.

Functioning consistently is the big problem

Many people in this spectrum of disability can still function at times, but they can’t do it consistently. That’s another area I think people don’t understand when it comes to the disabled. We live in a world where to maintain a job, you need to be able to function regularly and consistently – those areas are key to understanding disability. Someone may be able to do something once in a while, but to keep that up on a regular and consistent basis is impossible. People’s bodies can actually work well some of the time and they can still be disabled. But to never know when or if you’ll be able to do something is a special kind of hell. With your former abilities giving you a glimpse of the person you once were, only to then be snatched from you when you least expect it. People who are disabled can have good days, good moments, but they don’t control that. For many people who are disabled, life is an exercise in unpredictability in a world that demands predictable results.

Educating others: disability is more than meets the eye

So, as I try to do every so often, please spread the word and remind others that the subject of disability is a very complicated one. Remind them that there is much more that goes into making someone disabled than a wheelchair. Educate them that what they see with their eyes is often very far from the truth.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • Nancy W
    2 months ago

    Thanks for this reminder. I too “look good” Now that I am older and no longer take DMT, I sometimes forget that others are not as limited as I am. But, I am always aware of my limitations and try to take them into account.

  • Devin Garlit moderator author
    2 months ago

    Thank you @Nancy W!

  • markt
    2 months ago

    Devin,
    Yes you have again hit it right on! Im exactly like you ,well mostly your a very good writer and that is one of my week points but I totally agree with a beer I am better with a beer than with out and I can’t explain that either(I know a separate post) I am now 58 and I was diagnosed at age 50 with spinal cord lesion and brain lesions . Lots of stuff going on the inside numb all left side, something I still have well everything I still have, and fatigue severe and short term and slow memory has effected my ability to talk at the level I had done in the past .im not going on about all the other fun things but I still walk but very careful about it and I still work but its getting harder all the time. And still I hide it from everyone at work. I have a question about disability my dr seems to think I must love my job to keep doing it and feels I would get approved but how and when did you do it ?
    and get approved first time?

    thanks

  • Devin Garlit moderator author
    2 months ago

    Thanks @markt! Figuring out when to go on disability can be difficult, in my case, it happened and I was pretty unprepared for it. I was literally at work, didn’t feel good, and then that was the last day I worked. Some more details here is you are interested: https://multiplesclerosis.net/living-with-ms/disability-story/

  • Froggie
    2 months ago

    Devin, you hit the nail on the head with this article! It’s difficult to tell I’m disabled on first glance, as I’m not in a wheelchair either. I do use a cane, however, to walk longer distances or rely on my husband’s shoulder or a friend’s arm to balance. I also have cognitive issues that cannot be seen. I have a tendency to slur my speech and look like a deer in the headlights when I need to respond quickly. Like many of us with MS, it all depends on the day! I try my best not to act disabled, but sometimes it cannot be helped.

    Christine

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Froggie (Christine)!

  • Tazz
    2 months ago

    There is a new “movement” starting to gain some traction – it’s called “Think outside the chair”. Here’s their website – help to spread the word, peoples……….

    https://thinkoutsidethechair.com.au/

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Tazz, I love this!

  • Shelby Comito moderator
    2 months ago

    Amazing, @tazz! Thanks so much for sharing this helpful resource that sheds light on what disabilities really look like! – Shelby MultipleSclerosis.net Team Member

  • feenstra
    2 months ago

    Devin, thank you for another post that is so straight forward and loaded with info. I enjoy your writing, you have the ability to give some facts, with empathy, although not forcing your view upon others. Always refreshing to read, as if you speak my thoughts and mind. Blessings on your journey. Regards, Ria

  • Devin Garlit moderator author
    2 months ago

    Thank you @feenstra (Ria), really appreciate you taking the time to say that, it’s very nice to hear!

  • corgi9
    2 months ago

    Devin
    Unfortunately I don’t think there is any way to avoid this. Our “invisible” symptoms have always been a problem for us to explain and I’m sure for individuals suffering from other diseases that do not show the physical extent of their disease they have the same problem. I remember the day when I was confronted for using a UP parking space. My Sicilian heritage got the best of me and I convincingly asked that person that without knowing what my handicap was, did they want to change places with me. Created quite a scene at the store but I made my point.

  • Devin Garlit moderator author
    2 months ago

    Thank you @corgi9, I fear you may be right, but the more I can spread the word to make it a bit easier, I will! I’ve had a few incidents like that too!

  • vvxjr9
    3 months ago

    When I was younger there were so many different views and visions I had growing up and seeing others that were disabled. I never dreamed that I would one day be part of the disabled crowd.

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