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When you are disabled, there are some things that you may like about your disability but there will be even more things that you don’t. As a disabled person, it’s helpful to learn ways to accept your disability because it will make you happier but even though you have come to terms with something that doesn’t mean you love everything about it because some things are just frustrating. I know a lot of disabled people who love some things about their disabilities, but I don’t know a single person who would say that they love all the challenges and to embrace everything. The challenges of your disability are something that I cannot change and even though I have come to terms with the fact that I am not getting better it still doesn’t make the challenges any better. My disability has made me the person I am today but if I told you that I embrace every single challenge I would be lying to you because most of the challenges I face with my disability I am stuck with but I would not lose sleep if I woke up one day and they were gone. In this post, I am going to talk about some realities of my disability that I have learned to live with, but I don’t like at all.
Working out is twice as hard- I love Pilates and before I had hip replacement surgery I was able to do it well but because of my disability, I had more challenges than someone who doesn’t have Spina Bifida would have. Pilates has changed my whole view on exercise and taught me that you can make fitness fun because if it wasn’t for me stumbling across a YouTube video I would have given up on fitness and not come to the realization that exercise is something you get to do not what you have to. I will spend hours and hours creating an accessible routine because it’s my only choice but I wish it was easier and didn’t take half a day. Abled people don’t realize how good they have it when it comes to fitness because I would love to be able to do the first workout I found without needing to watch it to make sure it’s accessible. I have come across more routines that I can’t do than ones I can and it’s sad that no one takes disabled people into account when creating workout videos and I am not surprised that so many of us don’t work out. Accessibility needs to a be priority when creating workouts because although some abled people may utilize YouTube for workouts it’s most beneficial to disabled people who can’t go to the gym and don’t know where to start in their fitness journey.
Making friends is so hard- I hate that disabled people have to come to a reality that many abled people will treat them like a helpless disabled person and because of that you probably won’t have a lot of friends. Abled people do not look at disabled people in the same way as they would their abled friends and often disabled people are looked down on because of their assistive devices. It is frustrating that many disabled won’t have a lot of friends because people get scared and can’t get past someone’s wheelchair. Disabled people are different and it shouldn’t take twice as much effort for disabled people to make friends as it would for an abled person but it does. I wish people would realize that a wheelchair is nothing other than an assistive device that gives a disabled person freedom and can’t possibly know someone’s personality by the medical equipment they use.
Have to prove your capability to employers- I looked for a job for ten years and the only job offer I got was at a doctor’s office which didn’t end up not working out because the job that I was required to do was totally different than what was advertised. When you are applying for a job as a disabled person it is much harder to find employment than it would be for abled people and unemployment rates are higher within the disabled community. It’s not that abled people make better employees than disabled people because I truly believe that there are some jobs disabled people are naturally better at than abled people but many employers don’t see that and the problem is employers don’t think we are capable. Many disabled people face some kind of discrimination when going to job interviews and when I go to a job interview I pretty much know that as soon as my wheelchair is seen I didn’t get the job. Disabled people shouldn’t have to spend half of the interview trying to prove that our disabilities do not limit our ability to answer the phone but it’s is a reality for so many and I hate that it is. I wish employers would trust that I know my abilities more than anyone else and if I say I capable of a task I probably am because I wouldn’t apply to a job I couldn’t do easily.
You’re expected to be positive always- When a disabled person shows any kind of frustration or negativity often the first thing people do is start blowing up our newsfeed with toxic positivity. When was there a rule that disabled people had to be positive all the time? If anything you should expect disabled people to be more negative because all the challenges we face are hard and like most people there some days it’s especially challenging to see the positives in our disability. It is not helpful to tell disabled people that they need to always be positive because the reality is no one is and can be quite damaging when you force positivity on a disabled person.
You have to accept inaccessibility– We live in a world of inaccessibility and ableism and I hate that disabled people have accepted this reality. Disabled people are always facing some kind of unnecessary barriers because many people view accessibility as something that they can choose to do not something they have to. I just recently found out that all businesses have some accessibility law that they must follow except if you are a church. Churches do not have the same rules as your doctor’s office and can be as inaccessible as they want because they are exempt from inaccessibility. Whoever thought it was a good idea to exempt a business from being accessible are terrible humans and part of the problem. Accessibility should be required of all businesses and you shouldn’t be able to opt-out of it. Inaccessibility is a reality that many disabled people have to face but it wouldn’t be as much of a problem if disabled people were heard and businesses recognized that it’s important to be accessible because you are turning away your disabled customers when it’s too difficult to navigate.
Giving unwanted health advice is normal– When you are disabled you have to accept the reality that people are always going to try to cure and diagnose all your problems without wanting or needing help. I hate that it’s normal for abled people to start giving disabled people unwanted health advice but when we do it to you it’s frowned upon. If you are unfamiliar with my disability and want to learn more I would be more than happy to educate you but I don’t need your cures. When did it start being normal to ask a disabled person personal questions about their health that you would never ask someone without a disability? I am happy to educate people about my disability that have questions but disabled people shouldn’t be expected to answer every single questions you have about their disability and there should be a line that abled people respect.
You can be doing everything right and still get constipated- Since the day I was born my bladder and bowel muscles have always been weak and if it wasn’t for my medical equipment I could not go to the bathroom. My bladder is easily manageable and I won’t have a lot of problems if I do what I have to in order to take care of my bladder but with my bowel is not as easy. There are ways you can manage bladder and bowel health with Spina Bifida but nothing is perfect because there is no surgery that can entirely fix everything so all your muscles work the way they are supposed to. I have accepted the reality that sometimes I struggle with constipation because of the challenges of my disability but I don’t like this reality and I just deal with it. It’s frustrating that can be doing everything that seems to be right but at the end of the day I don’t have full control over my disability and there will be days when my body doesn’t want to cooperate.
I have to always wear leg braces every single day– I have to wear leg braces because I don’t have a lot of control in my legs and when I don’t wear them my posture is no the greatest and it’s slightly harder to walk. I wear my leg braces because when I do it’s safer and I don’t have to worry as much about falling but I still don’t like them. Leg braces are necessarily but as far as comfort goes it’s a zero.
The reality of a million surgeries- Some people with Spina Bifida will need a lot of surgeries to manage their condition while others with less severe forms may not need as many but it depends on the individual because two people with the same disability and form can both have totally different experiences. I have Myelomeningocele which is the most severe type of Spina Bifida and because of all the challenges that come with my disability I sometimes need a lot of surgeries to manage it. I am a better person because of all the challenges I face but not everyone that has the same form as me will need a lot of surgeries and I know plenty of people with my same form that haven’t had many surgeries at all. I have accepted the reality that I need a lot surgeries to manage my disability and there isn’t a whole lot I can do to change that but I still don’t have to like it.
When you are disabled, there may be some things that you like about you may like about your disability but in my experience, there are more things that you don’t. As a disabled person, I try to be as positive as I can but like most disabilities sometimes the challenges get to you and it’s hard to see the good. Disabled people are always expected to love everything about their disabilities, but nobody does and it’s not realistic to say that disabled people should love everything about their challenges all the time. Disabled people are going to have bad days and you shouldn’t be surprised when disabled people throw their assistive devices and yell things that they probably should have kept to themselves. There are some things about my disability that are not that terrible, and I don’t mind those challenges but there are even more things that I hate, and I couldn’t possibly list them all in one post. Accepting a disability can be helpful for disabled people but it’s okay to have moments where you feel frustrated and like nothing about your disability. What things about your disability do you hate, and wish would disappear?
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