The Inconvenience of Disability

I often feel like a burden to others when we are planning to do things together, particularly if it is a gathering of friend(s) and/or family over more than one day. Because, let’s face it, I have a restricted scope of activity options, and the need for a certain type of schedule in those options. I need places to sit, and more importantly, there had better be a bathroom. Make it two or three.  It’s a real pain, and at times, a real problem. I fight the feeling of guilt and shame over asking others to bear those restrictions with me. Having a disability is an awful inconvenience. It really gets on my nerves sometimes.

Sadly, the inconvenience of disability is often not well understood or accepted by others. There are a select few close friends and family who have come to accept that when they are with me, and want to spend time with me, things get done a little, ok, a lot, differently. Now I don’t get how anyone can plan an outing without knowing if there is a toilet, but apparently it is fairly normal to not give it a second thought. I don’t just give it two thoughts, I might just give it ten.

Done are the days when I can just decide I want to do something, or go somewhere and just take off and do it. I need to make sure I have enough energy. The shoes had better be very comfortable. It can’t be too hot, that drains my energy, it can’t be too cold, that makes my muscles hurt. There need to be benches and chairs to sit down in. I have to time my eating and drinking so that I don’t have to use the bathroom when there might not be one. I have an hour and a half rule in the mornings because coffee is really an IC no no. I won’t go anywhere in a car until an hour and a half after that coffee. Tried giving it up, didn’t fly. If there is no promise of a public bathroom it will be a short jaunt. And yes, I will sometimes buy a drink of something to use their bathroom. But that gets old. My disabilities can be such an inconvenience.

I am an introvert by nature, and need a lot of alone time. I prefer small groups of people, often just one other person, to a group. But sometimes, the being alone or doing things alone or only with my husband, or with my parents, is because I don’t want to drag other people down with having to do things a certain way. And I have had a number of people along the way who have indicated, often without directly saying it, that I do just that. They want to know why I can’t just be more flexible. It is often quite clear that I am in their way of having a good time. OK, so I don’t spend too much time with folks like that anymore, but sometimes, well, it just is what it is. I would love to be more flexible and not be tied to the toilet. Not sure why that doesn’t register. We may be back to the because I look fine thing. Or perhaps it’s the you should suck it up and deal thing, and not be selfish because a group is involved. Which brings me back to the guilt and feeling like a burden.

Having a disability can be so inconvenient. Now please excuse me, I have to find a bathroom.


5 responses to “The Inconvenience of Disability

  1. I’ve been thinking about the same subject a lot recently, may end up doing a post sometime soon.

    The close family and friends who understand all the restrictions and limitations but still spend time with you do so because they want to. To them it is not a burden.

    With everyone else it’s just ignorance, or I should say lack of understanding. It’s not their fault. They just don’t know any better, why would they?

    I’m trying to stop thinking of myself as a burden but I understand why it can feel that way a lot of the time. Just need to be thankful to those who do understand and give the benefit of the doubt to those who don’t.


  2. I wish those of us who love you could help carry your burden, or perhaps more helpful would be a clean easily accessible toilet. The truth is that with all the emphasis on disabilities being about abilities that we who don’t share in the disability often don’t realize the inconveniences of having one. You speak the truth, it is an inconvenience but more so for you than for the rest if us. Most of the time, the average John Doe (including yours truly ) is oblivious to your plight and for that I am truly sorry. Your company is worth any inconvenience you might require but perhaps I don’t make that obvious and for that I am truly sorry. Thank you for sharing your personal journey, may we all be a little kinder and gentler in our day. As my Brandon use to remind me when I got on his case, “we all have our burdens mom, we all have things we carry”. Let us try to ease our friends load not add to it.

  3. A thought:
    “Introverts keep their best stuff inside—that is, until it is ready. And this drives extroverts crazy! The explanation for the introvert’s behavior—and there must be an explanation for this behavior, say the extroverts—is that he or she is antisocial, out of touch, or simply a snob.”
    ― Laurie Helgoe, “Introvert Power: Why Your Inner Life Is Your Hidden Strength”
    Love Dad

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