What I Don’t Love About My Disability

When you are a disability advocate people often think that you love every part of your disability and whenever you show any signs of frustration they are shocked. The truth is as a disabled person you won’t love everything about your disability and some things we just have to learn to live with because we are stuck with them. As a disabled person, we learn to embrace our disabilities but we don’t necessarily love everything about them and it shouldn’t shock you when a disabled person shows frustration towards their disabled but as a matter of fact, you should expect disabled people to yell things that they probably shouldn’t more than abled people from the many challenges that are forced to face every day. My disability has made me who I am today and I am not looking to change that because I have learned to embrace it but if I were to say I loved everything about it that would be a big fat lie because there are tons of things about my disability I in fact hate. In this post, I am going to talk about what I hate about my disability because it’s okay if you don’t love everything about your disability no one does!

Working out is not the same experience- Don’t get me wrong I love Pilates and look forward to doing my routine every day but when you are disabled working out isn’t nearly as rewarding as it is for abled people. It requires so much more time to create a fitness routine when your disabled and a whole lot longer to get results when you have so many limitations on what exercises will be effective for you. I do Youtube video as part of my workout routines but before I can do anything I have to watch the video I plan on doing to make sure I am able to do it because sometimes I may not be able to or can only to the first one or two moves. I don’t mind spending time creating a routine because I have gained a lot of strength because of them but it takes me about an hour (sometimes longer find one so it’s not a quick thing to do.  I enjoy working out as it’s my time to clear my head and come up with new ideas but it’s not easy by a long shot because even though I can do most things I do have to get creative with my workouts and modify so I can do things safely.  I have come across so many routines that I can’t do and sometimes makes me sad because they look fun and I can’t help but wonder if I would enjoy it but I try not to think about it too much because there is no point in using all your energy to get worked up over something that could have happened but didn’t.

Making friends is so hard-  People often think that if I were to get out in the community I would have more friends but this is not necessarily true. When you are disabled people often see your disability and will judge you before getting to know because they see it as a negative and think that all disabled people are incapable of building friendships or speaking for themselves. There have been many times I have been out in the community and have tried to make friends or get some decent customer service and have been shot down because people see my disability and think I am incapable. People don’t look at disabled people in the way they look at abled people and they tend to look down at the disabled like we are a lesser human being but the truth is your not any better just because some tasks are a tad bit easier and we are just different.    We are just different and there are many disabled people that are just as intelligent as an abled person and if you were to give them a chance before making wrongful accusation you may realize disability is not a scary as you think.

Have to prove your capability to employers-  I looked for a job for nine years and the only job offer I got was an on the job training position that I ended up not accepting because it would have been too much to be a manager for a doctor’s office as my first job. There is so much discrimination in the hiring process for disabled people that I eventually just gave up looking for employment because it got to a point when I realized I was not going to get hired since it got too hard to prove my capabilities to employers since they all judged me based on what they saw.  I am happy with where I am now and strongly believe it was for the best and really motivated me to focus on my blog but it’s also sad that so many disabled people have such a hard time getting an interview but an even harder time getting hired because people think they know our disability better than we do.

I hate how every task is so hard- My hips are dislocated which my braces do help with keeping feet in the corrected position and my body in the right alignment but because of almost all tasks are difficult because my hips give at random times causing to fall. You can’t entirely prevent this from happening but over time I have strengthened my body and what was happening every day now only happens once every couple of months so there is definite progress. You don’t know when this will happen and it will come without warning but even small tasks like sitting on the toilet that you wouldn’t think shouldn’t be that hard actually can be a bit of a challenge.

You’re expected to be positive always- When disability advocates show any sign of negativity people tend to be very shocked by this and blow up your newsfeed with inspirational quotes or just flat out tell you to change your mindset. When was there a rule that disabled advocates can never be upset about anything or show any sign negativity? We are human just like you and if it’s okay for abled people to say something negative then it should be fine for disabled people to do the same without people looking down on us.  Telling someone to be positive and that it’s all in the mind is not helpful but something we hear all the time and are sick of hearing! Actually, you should be less shocked when disabled people are negative because we face so many challenges and it’s really frustrating there is so much pressure for disabled people to always be positive.

Bladder and bowel problems are annoying – My stoma’s have done so much for me in making me become more independent and I understand why I have them but even though I am stuck with it doesn’t make me suddenly start to love them.   I don’t like anything about catheterizations or managing my bowel regimes because you can’t just leave the house without remembering to grab your equipment or you literally can’t go to the bathroom and it can be so hard to have to hide your condition from people who don’t understand.  It can be time-consuming to do bowel routines which don’t always work so it can be pretty stressful to hang out with friends because in my experience when things go south people aren’t always nice about it and just try to make everyone laugh like it’s some kind of joke. It can be a pain in the butt dealing with these issues but it’s important we take care of ourselves because some things are out of our control and happen for reasons we don’t know why so the only option we have to manage these conditions is coping!

There is nothing I can do to get rid of my migraines- The reason I have migraines is because  I have Hydrocephalus and there is not a darn thing I can do about that except take my medication to help prevent headaches or migraines and manage them in the best way that I can.  I can’t change anything about that diagnosis or demand a cure because there isn’t one and as long as I have Hydrocephalus I will be more prone to headaches or migraines and will continue to get them.

How people think they are entitled to personal information- Total strangers have asked me personal questions like how do I go to the bathroom like it’s this normal thing and I hate how they expect me to answer and when I don’t they are shocked because they feel entitled to it.  Why anyone would think questions like these are okay to ask disabled people and not okay to ask abled people I will never understand and it doesn’t matter who you ask certain questions are rude and you should never ask anyone no matter how curious you are. Curiosity doesn’t make something okay because some things are none of your business but when you are disabled some people don’t respect that and think they are entitled to whatever they are asking. If it would be frowned up for disabled people to ask about your private life then don’t ask it shouldn’t be okay for abled people to do that same thing!

My health is unpredictable- A couple of months ago I needed a stoma surgery because my bladder wasn’t holding as much as it should and to fix that one of my stoma’s needed a revision which came totally out of the blue and I was not expecting that to happen. When you have Spina Bifida there are number of health challenges you will face and even if you are following your doctor’s instructions exactly there are no guarantees you won’t need multiple surgeries to manage your condition. It can never hurt to take care of yourself when you have Spina Bifida because you most certainly can prevent some health issues but unlike abled people, you can’t always be in control of whether or not you will need a surgery because sometimes these things just happen and we aren’t sure why they do.  It’s frustrating to have to live with this fact but you do what you can to stay well because you can’t do anything more!

As a disability advocate we learn to embrace our disabilities but let me be clear that doesn’t mean we love everything about our conditions and often there are many things we don’t like about our conditions but secretly want them gone. Disabled people try to be as positive as possible but sometimes the challenges get to us and it is really hard to see the positive of it. We have bad days just like abled people do but society expects us to be happy and cheerful all the time and when we are not people are shocked when we let out a good rant.  You shouldn’t be shocked when disabled people get angry but expect should expect it after all the things we have to hear on a daily basis that we shouldn’t have to put up with but are forced to. Disabled people have feelings too and it seems unfair that we have to keep our feeling to ourselves to spare yours when it’s perfectly okay for abled people to say whatever they want without having any regards to someone’s feelings. These are only a small fraction of some of the things that I hate about my disability and I couldn’t possibly everything that frustrates me about being disabled in one post and it’s okay if you don’t love everything about being disabled but even if you hate most things about your disability learn to accept and embrace it because it will make you a much happier person! What about your disability is aggravating and that you wouldn’t miss if it was gone?

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