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The Worst Part of Being Disabled


The central character of my novel is a wheelchair user. I know that's no big surprise.

It's important to me, however, that I'm able to relate the experience of severe disability to a universal audience. I want to make sure the character expresses his worldview in a powerful way.

For example, you can close your eyes, but that doesn't help you truly understand blindness.

Every so often I hear about some sociology professor who gives everyone a disability for a day. People come up to me and tell me how they learned to understand my limitations and frustrations because they borrowed a wheelchair and went to the mall.  If they want to understand my frustrations, they should borrow a wheelchair and go to a job interview.

Whether you have been disabled your entire life, or spent your life in perfect physical condition, I want to get your perceptions on true disability.

What do you feel is the worst part about being disabled? Please be very specific. You can choose any disability, but please limit yourself to physical disabilities such as mobility impairment, blindness, deafness, dwarfism etc. I realize that physical disabilities often coexist with cognitive, emotional or learning impairments. But for the sake of this question, focus on the primary disability being physical.

Try to identify one single worst aspect of disability.

You may share in the comments below. Your sharing may be anonymous. You also may share privately with me directly by e-mail. (Remove the hyphens and e-mail jason-@-tweednet.com.) I may post privately shared content, but I promise to remove any identifying information.

Finally, please pass it on. I want to get lots of response, insight, and perspective. Thanks.

Comments

  1. The most difficult thing about my physical disability is the randomness of it and the fact that it's not outwardly apparent. I have good days and bad days. Some days I can walk without a hitch in my step, and others merely adjusting the angle of my knee by a single degree causes agony that has me hiding grimaces and tears. I suppose it can be nice that I "look" normal sometimes, but other times... well, other times I wish it was visible so that people didn't look at me and think I'm just trying to gain pity.

    Jason, there's so much more I could say but I figure I should leave this where it is. If you want to have a more in depth discussion, I'd be happy to.

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  2. I've heard that from several I know that have invisible disabilities. Conversely, I've also felt at times I wish mine was invisible. Thanks for sharing, Ang.

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  3. Anonymous11:45:00 AM

    To me, the worst thing about being disabled is the limitations it has imposed on my world and the alterations to my perspective of myself and of everyone around me. I don't see the world as being full of endless possibilities. I can't accomplish everything I'd like to, go anywhere I want to, or be everything perhaps I should have been if not for this disability.

    The place that I feel the safest and most comfortable is my home. It's set up, as best it can be, to suit my needs. I struggle even here, but I struggle by myself. The outside world is full of unknowns, dangers, and struggles that are on display for the rest of the world. In my home, I know I can use the bathroom. I have the tools to get dressed. I have a comfortable place to sit. If I go out, I have to face asking for help to do most things, struggling to do things on my own, and being uncomfortable or in pain almost all of the time. So I often don't go out. It's easier to stay home where I have more control. But when I do this, I'm missing out - on seeing people, going places, basically experiencing life. What kind of person would I have been if not for this disability? What kind of experiences would I have had?

    My disability not only shrinks my world, but also causes me to see people in a different way. I find myself starting to see people not just as people, but as a means to an end. What can this person help me with today? What can this person do for me? Could you get this, would you mind, sorry to bother you.

    I'm sure I would have been someone else if not for this disability. I'm sure the world would look like a different place to me. I'd want to be out experiencing everything that I could. I'd wake up in the morning and think, where can I go today? I'd want to get to know people, not just so that they could help me, but just to make a simple human connection. I thought that as I got older, I'd get more accustomed to these limitations and to my shrunken world. After all, this is never going to change so I might as well accept it and make the best life that I can. But the opposite is true. Every day I lament it and fantasize about what life would be like, if only.

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  4. For me, the worst part of my "disability" (and I hesitate to call diabetes & the various other ailments I have a "disability") is missing out on things. Like when my kids had a lot of activities going on. Most of the time, I could be there, even when it took all I had to do so, but other times, I simply could not. Couldn't take them or be there to cheer them on, see their accomplishments.
    I hate feeling like a burden and it makes me feel worthless. No amount of reassurance from loved ones can convince me that I am NOT a burden at times. I know a lot of that is truly Satan and his attempts to make me give up.
    Like someone else has said, I'm sure I'd be a different person without the daily struggles I have because of my diseases. I'd probably be a much less empathetic person. I'd have less patience.(and trust me, I don't have that much to begin with)
    I believe that all things happen for a reason, even horrible things. I truly believe that I have suffered through being diagnosed with diabetes at age eight, enduring many infections that because of the diabetes required hospitalization, living with doubt through two pregnancies riddled with complications (then being blessed with two healthy sons!), suffering through 2 weeks in the hospital with all my skin blistered & sloughing off from a severe reaction to antibiotic then almost another year before my skin got even close to normal. Ending up with scars on the inside of my eyelids that later caused me to develop recurrent erosion syndrome after one of my kids scratched my eye...the scars kept pulling the flap of skin back loose so it wouldn't heal. That took 9 months of painful infections and procedures involving razor blades and pins to ever heal.
    All those things? They've made me a stronger person, even while my physical abilities are waning. I'm stronger spiritually and my faith is much stronger because I've seen God bring me through each trial, each medical "catastrophe" and I know there is nothing He cannot do. I know that He has led me through those valleys so that I could minister to and encourage someone else who is walking through them that they will reach the mountain top again.
    Does that mean I'm always positive and inspirational? No! Far from it, actually, but I know that one day, I will know and understand perfectly the "whys" of my life. I'll know why God led me through each struggle. But until that time, I am satisfied with the knowledge that He is in control. Without that knowledge, I'd be a very bitter, angry person. I would feel cheated instead of blessed, defeated instead of victorious, beaten instead of beloved.
    I guess it all boils down to perspective. I refuse to whine, at least not often. I could be unable to speak or see or walk or talk/type... I could be lost inside my own mind without the ability to communicate with those who've been sent to love me. There are so many reasons to smile, I can't cry every day. Sure, it takes a lot of effort NOT to cry some days, and I'm human, so I allow the tears when the situation demands it. But I refuse to wallow in them.
    Hope this wasn't *too* rambly and that it helped you in some way.
    God bless.

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  5. Rachel Fecho4:58:00 PM

    Not having a disability, it is very scary to share my thoughts! So I will share my "imaginings" but keep it brief. I suppose it would be maddening and hurtful and lonely to so often be seen first as a disabled person. Instead of being seen as a PERSON. Being known deeply for one's personhood. A person with a family. A person with a career. A person with blue eyes and an interest in folk music and a weakness for ice cream. A person with a spirit, with intelligence, humor, and soul. (oh yeah, and with a disability). I hope what I'm getting at makes sense.

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  6. Kristen Tweed5:42:00 PM

    For me, being the wife of a person with a disability, I often feel frustrated when I want to plan a family outing. We are so limited when it comes to my husband being able to participate. I'd love to be able to go camping, hiking, boating, bike riding, but it's just not possible to go as a family. And to go without my husband, well, what kind of family outing is that?! I feel that my kids are limited on what they can and have experienced so far in life. However, if they didn't have a dad who was disabled, they would be very different kids right now.

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  7. A couple of years ago (I am 37), I randomly started having seizures. Full-on, grand mal seizures, for no reason anyone can figure out. For six months I could not drive - had to beg friends to take me to the grocery store, to get my daughter from school, to do anything that I was SO USED to just doing myself. And I have always been fiercely independent...I would rather suffer in silence than ask anyone for ANYTHING. And I had to depend on others for everything for the entire time.

    Now, I can drive, I am on medication that mostly controls the seizures...mostly. But I have had one or two hit randomly - at work, in front of my then 8 year old daughter...most at home in bed. But that fear, that one could hit..while I am speeding down the freeway, or balanced on that ladder I am about to climb...it is always there, and I resent it. I am not conceited enough to think my occasionally chewing on my tongue ranks with your living daily in a wheelchair, but I have experienced a little of the way people treat you...just differently...after they witness you falling on the floor and doing a jive =/ And my daughter is afraid every time she thinks I may be twitching oddly - and THAT I really hate. I hate that I bring fear into her life.

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  8. I also (for the most part, anyway) have one of those "you don't look sick" deals. But then, as Tif has mentioned, the way people can sometimes treat me after they've seen me start sweating profusely, unable to speak "straight", sometimes bawling uncontrollably for no reason at all... I've had diabetes for over 36 years now (I'm 43) and I'm not big on worrying what other people think of me, but still... it sometimes gets to me.
    I've had my then almost-four-year-old son try to rouse me out of a pregnancy-exascerbated low blood glucose & have to call my mom. I know about seeing fear in your kids eyes when they think "Mama's gettin' low." or they've seen me in a severe low bg.
    My family almost always knows when my sugar is low before I do, but none of them can tell me HOW they know. On the flip side, sometimes when I'm justifiably upset they'll ask in what sounds like to me a very condescending tone, "Is your sugar low?" as if THAT is why I'm upset & not because I SHOULD be. *sigh*
    That, thankfully, doesn't happen very often but when it does, it makes me just livid (& just FYI for the curious, most of the time that question will come from my mother... urgh)
    Also, I meant to mention too that I can't compare what I deal with to living daily in a wheelchair, Jason & hope I didn't sound like I was trying to. I think this is a great idea of yours to have people share their thoughts about disabilities. I'm enjoying reading & have shared your link on facebook. Hopefully, more people will come out. :)

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  9. Anonymous3:46:00 PM

    My perspective is one of a mother who passed along a hidden, recessive gene that, with the recessive gene from his father, caused the disability in our son. I hurt for him everyday. I didn't raise him to feel sorry for himself but I am sorrowful because of the limitations he experiences. I can't imagine having to ask someone else to scratch my nose, get me a drink, pick up something I dropped or take care of me in very personal ways. He has had to give up a lot of dignity and I pray that all of the caregivers since me have been respectful and caring.

    I know he has missed out on a lot of adventures that he might have had if it were not for his disability and hence a life spent as a wheelchair user. But, he has achieved many milestones that were thought to be unattainable. I am so proud of the husband and father he has become. We learned, together, how to manage his disability and maximize each life experience. We dealt with road blocks, moved mountains and persevered. My sad heart is not filled with regret at having given him life; for he is making the most of every day and I am his proud mother.

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  10. When I was in my early 30's, I had 3 slipped discs due to heavy marathon training. Initially, I couldn't walk for 3 months. I recall being at people's mercy - so to speak - to help me do daily things. I remember when I did start to walk it was at a VERY slow and painful pace. I lived in NYC and was used to taking trains to get around. I recall having to take the bus and asking the bus driver (who was clearly irritated) to lower the bus for me because I couldnt step up. I remember having to wear the very visable back brace and having the burning feeling of people's eyes on me. I even recall insensitive questions from overly 'friendly' people about my condition. Overall I felt like I was no longer a participant in normal daily life and that the world was created for able bodied people. That was such an eye opener. I also learned a lot about myself and about having false pride. Back then, not many people came to visit me to see if I was ok. I felt as though everyone had forgotten me. This was partially my fault as I also did not let anyone know how I felt.

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  11. Sorry to post twice. Id like to share the experience of my son (only 6). We used to have tons of playdates and now that people know that he has epilepsy, theyre afraid. Ive tried to do a bit of awareness raising and spoke to other parents about 'what to do if he has a seizure' but it seems more than what they feel comfortable managing. As a result, he is a bit socially isolated. A few summer camps have also turned us away because of the water/epilepsy issue. And because his condition is exacerbated by a change in sleeping/eating schedule, we've become totally inflexible about this and hence summer evenings out as a family are a thing of the past. For now, he is not very sensitive about these changes but before his condition was controlled with medication (we went for 2 full years of not knowing what it was that he had), he experienced a lot of self pity about what was happening (understandably).

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