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When you are disabled you will have many positive experiences that most abled people will never get to experience. You meet people all kinds of nice people that would have never met if you weren’t disabled and are given opportunities abled people are not. Living with a disability definitely has its perks because of these opportunities but that doesn’t erase the fact you are still disabled. Not everything is going to be happy and positive all the time like everyone wants it to be but sometimes it can be quite depressing. You can’t do everything abled people can so sometimes when they are enjoying themselves your sitting there watching. I have gotten used to what it’s like to be disabled because I have been that way since I was born and can’t even imagine what it would be like to not have so many challenges but there are still moments when I wish I wasn’t. For the most part, I have accepted my disability and often forget I have I am disabled but there are times people do things that are a definite reminder I am in fact, disabled. In this post, I am going to talk about a few things that happen in life that remind me of my disability.
When I am reminded to wear leg braces for the thousandth time-Sometimes you have to wear leg brace when you are disabled because you don’t have the same stability as an abled person or lack muscle control in your feet like I do making it difficult to keep them straight. Leg braces are necessary for some people with Spina Bifida and aren’t the most awful thing you’ll have to do but they can get hot especially during the summertime and do feel a little heavy because they do hold a little bit of weight. I know I need to wear leg braces to have more stability and to keep my feet in the correct position but sometimes I want a lazy day and don’t wear them as often as I should be. When I am reminded that I need wear to them I won’t argue because I know your right but it doesn’t make me want to any more or less. Most people don’t ever have to worry about this or think braces are cool but wear them for a couple of weeks and it’s not as cool as you think!
When I have surgery again– There are many different levels of Spina Bifida and some people you will not even know they have it while others are full-time wheelchairs users that need some kind of surgery every couple of years. Everyone is different and even though two people with Spina Bifida have the exact same form it doesn’t mean that doesn’t mean it affects us all the same beacause it affects everyone so differently. I have had many surgeries to manage my condition but I know of people with Spina Bifida who have the exact same form as me and don’t need nearly as many surgeries as I do. I am not constantly thinking about all the challenges because it’s everything I know and I find ways to work through them but I do sometimes wish I didn’t struggle so much. When I have my tenth bladder surgery it’s something very familiar to me and is not surprising but is a constant reminder of how much I struggle because of my disability. Most people don’t even know what it’s like to have surgery and the fact I know it too well is bothersome.
When my sisters do things I cannot-I have four abled sisters that sometimes go and do things that I am physically unable to participate in. I have accepted that because of my disability that there are some things I will never be able to do and wouldn’t want my sisters to stop doing things they love on my account but it still doesn’t make anything better. My sisters usually invite me if they are doing something fun but if it’s inaccessible I often opt-out because I would just be bored and it wouldn’t be the same experience for me. Sometimes I have to watch my family do fun things that I cannot which can be depressing at times because I wish I could participate in these things but it’s just part of living with a disability. I do a lot of fun things with my family but I can’t do everything because of my physical limitations so when that happens it is an instant reminder that I am disabled and not everything is going to be the same for me but that is okay.
Every time I apply for a job- I looked for a job for about ten years and was only offererd a position once because I was the only applicant and she was desperate which didn’t end up working out. I was asked to be a manager of doctor’s office which would have been very stressful for someone who has never worked a day in their life! I gave up looking for a job about a year ago because of all the discrimination I was facing in job interviews. It didn’t matter what I said many employers didn’t think I was capable of sitting and and answering phones or doing computer work because of my disability. Many of the jobs I have applied to I was qualified for but it was really hard to convince employers of that because they only saw my disability and assumed I was incapable of everything. Working a real job would be nice but it’s less stressful just doing my own thing and not worrying about going on interviews that will probably turn me down because I’m disabled.
Leaving my home– Most abled people can visit their friends whenever they want but unfortunately, I don’t have that luxury. I have a lot of visual perception challenges making it so my eyes don’t work together so I can’t see what most people can and it would be incredibly dangerous for me to sit behind the wheel to drive. I don’t struggle as much because I go to occupational therapy and we work on improving these issues but it’s not enough to wear it would be safe for me to drive and probably never will be.. Sometimes I go a year or longer without seeing my friends outside of FaceTime which is depressing because I wish I could see them more. Whenever I want to hang out with my friends I have to check with my mom to see if she’s available to take me and if she’s not I have to take the bus which is not always reliable. My friends can’t drive either so they can’t even pick me up to hang out which is why we don’t see each other often but cherish the times we finally do!
Living with my parents– -I still live with my parents because I could never find a job and would never be able to afford to live on my own since I don’t make anywhere near close in disability checks that I would need to live independently. Living with my parents isn’t awful because I do have my room and bathroom but I often do wonder what it would be like to live on my own. Many people my age are either starting a family or buying a house which I would love if I could just do one of those things. It would be so much more work to move out and cost a little more because I would need more help so for now it makes sense not to.
Everytime I workout- Working out not only helps me forget about my disability because I learn so many ways in how I can move by body that I wouldn’t have come up with on my own but also reminds me of how disabled I am. I can’t just decide I want to grow my glutes because a lot of those muscles don’t work so it would be a waste of time to try. Working out can be fun but also can be stressful because it can take so long to find a workout that can kind of do and if even then it won’t be as effective as when abled people do it. Most abled people can pick a routine that looks fun and burn tons of calories but for disabled people we don’t have that option because not a lot of workouts are accessible for us!
When I am never asked to babysit- I have a three-year-old niece that I am lucky I get to hang out with a couple of days a week. When I see her usually someone else has babysitting duties because I have never been asked to babysit because of my disability. I understand why people wouldn’t ask me to babysit because a lot of people want to make sure their child is safe and don’t know what I am capable of but I do die a little when people just assume I can’t do it and never ask. It’s not all that bad though because I never have to worry about my life being inconvenienced because I had to babysit.
When I can’t go to the bathroom- I lack bladder and bowel control which I manage through doing regular catheterizations and doing my bowel regime a few times a week. For the most part, everything works in the way it should but sometimes it doesn’t matter what I do I can’t have a bowel movement which puts me in severe pain until I am able to. I know if I wasn’t disabled I wouldn’t have this problem and could have bowel movements easily and in a few minutes instead of a few hours. For me, that is always a reminder I am disabled and will always struggle with this even if I am doing everything right.
There are many positives to living with a disability but also some negatives that we wish would all go away When you have been disabled your life you don’t think if yourself in that way and after a while it becomes normal to you. It’s hard for you to even imagine what life would be like without a disability because being disabled is all you know. There are some things that are the same for disabled people as they are for abled people but there are also those things that are totally different for us. You are not alone because every disabled person I know has felt left out at some point or lonely because they can’t participate in the same activities as their abled friends. I try not to focus on all the challenges or think about everything I am missing out on because that will get depressing but instead focus on things I can do not things I can’t. What reminds things remind you of your disability?
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Connected Carole
Some reminders of my disability are similar to yours: not seeing friends, sitting home while others go out. Though our disabilities are so different, I can’t fully enter life. I can do a lot, but I’m reminded when I remember what I can’t do: get up and go somewhere whenever I want; traveling easily; camping; interacting with groups; teaching at Church. Good luck with your life.