Disabled people are often viewed as inspirations by non-disabled people, and we are expected to be positive all of the time, and when we are not people are shocked. Disability acceptance can be helpful for disabled people, but disability acceptance does not mean you have to love everything about your disability, and I don’t know a single disabled person who does. I have accepted my disability but there are some things that I struggle with because of my disability that I am stuck with but there is nothing about it that I like. Disabled people don’t have to love everything about their disabilities because it’s okay to be frustrated sometimes and it’s unrealistic to expect disabled people to love everything about our disabilities. There are some things about my disability that I have learned to accept but I don’t embrace them because there is nothing that I enjoy about chronic constipation, and I am forced to live with these challenges. Disabled people do not always have to look for the positives in every challenge we face and sometimes we are forced to cope with challenges but wish they would go away. . What do I hate about my disability? In this post, I am going to share five realities of living my disability that I wish I could make disappear.
I hate that going to the bathroom is so hard- Most people I know with Spina Bifida struggle to go to the bathroom because a lot of the time your bladder and bowel muscles do not work properly. There are ways you can manage bladder and bowel problems with Spina Bifida such as getting a stoma, but these things are not cures, and going to the bathroom is still hard. I struggle with a lot of physical challenges that I don’t need a cure for but if there was a cure for bladder or bowel problems, I would totally be down for it because living with bladder and bowel muscles that don’t work can be very painful and is one of the most frustrating parts of my disability. I am grateful that there are ways that I am able to go to the bathroom independently, but I don’t like that accidents are unpredictable most of the time and that I have to spend hours sitting on the toilet. If I woke up tomorrow and my bladder and bowel problems, were cured I would throw a party and wouldn’t miss them one bit because there is nothing enjoyable about the pain of constipation and I wish I could prevent painful constipation by eating healthy and exercising. Bladder and bowel problems are something you learn to cope with but even though you accept your reality that doesn’t mean you have to like it!
I hate that I need so many surgeries- Some people with Spina Bifida do not need a lot of surgeries and it depends on your level of Spina Bifida because people with milder forms often have less challenges and will not need as many surgeries. I live with the most severe form of Spina Bifida and have needed dozens of surgeries of life-saving surgeries and although I do love getting presents when I am recovering from major surgery, I don’t love weeks of severe pain. If I never had surgery again, I could live with only getting presents on my birthday and Christmas. Most people without a disability can stay out of the hospital by eating healthy and exercising but it’s not that simple for disabled people because I have health challenges non-disabled people do not have and even if I am eating healthy and exercising regularly I still can’t completely prevent surgeries. Non-disabled people have the privilege of having good health but when you are disabled you don’t always have that privilege because you face challenges non-disabled people don’t and I hate that surgeries are not in my complete control to prevent.
I hate that exercise is so inaccessible– Exercise is a privilege and I am grateful that my disability doesn’t completely prevent me from exercising because weight management is so much easier when you are able to move. I love that my disability does not completely prevent me from exercising, but I hate how hard it is to find an accessible routine because there is nothing more frustrating than spending hours looking for a routine that you still end up having to modify to make that routine possible. Disabled people are often told we should exercise, and you should but it’s not surprising that a lot of people don’t because fitness is not accessible. Fitness shouldn’t be that hard because exercise is just as important for disabled people as it would be for non-disabled people, and I think if fitness was more accessible more disabled people would exercise. I love to exercise but I wish I was not as limited and could exercise to the extent a non-disabled person can because it is frustrating that people don’t recognize that accessible workouts are important. Disabled people shouldn’t be forced to do a routine they don’t really like because it’s their only option but often we are!
I hate that I am expected to be positive- When you are disabled a lot of the time non-disabled people expect you to be positive all the time and when you show any kind of negativity people are shocked and tell you to be more positive. Disabled people struggle constantly, and it is not surprising that sometimes we are a little negative because I don’t know a single person who has never had a negative thought, and if anything, you should expect disabled people to be negative. Why is it bad when a disabled person is negative, but a non-disabled person can be as negative as they want? Disabled people are not here to inspire you and there are going to be days when I am not feeling positive, and I shouldn’t be afraid to say something negative because people think that disabled people should always be positive. I hate that it is acceptable for a non-disabled person to be negative, but as soon as a disabled person is negative, people start shoving toxic positivity down our throats.
I hate that I am in pain all the time– Some people with Spina Bifida live with chronic pain but not everyone does and most friends I have had with Spina Bifida do not have any more pain than a non-disabled person would. I live with chronic pain because I have developed painful conditions such as endometriosis and get more painful periods and also have chronic migraine because of Hydrocephalus. I have accepted my chronic pain, but I hate living with pain because it affects my quality of life and prevents me from doing things I once could with enjoyment. I have lived without pain for most of my life and miss the days when I had energy because there is nothing enjoyable about being fatigued all the time and people still expecting you to do things in the same capacity people without pain do.
Disabled people can be happy in their disabled bodies, but it is okay if there are some things about your disability that you want to get rid of because some things are just really annoying. Disability acceptance means you have accepted your challenges, but it does not mean that you have to love everything about your disability because there are some things that you wish would go away and any disabled person that tells you they love every challenge is probably lying to you. There are a lot of things that I love about my disability that I will talk about in a future blog post but the things I don’t like about my disability far outweigh the things I do because it’s hard to be disabled in a world designed for non-disabled people. It is not negative to say that there are some things you don’t like about your disability and it’s the truth because it’s a whole lot easier to accept these things rather than try to convince yourself that you love being in pain. You can be positive and not love everything about your disability because there is nothing wrong with wanting life to be easier. What do you not like about your disability? If you liked this post please leave a comment below and share it with your friends.
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