Whenever I am out and people see my wheelchair usually someone’s first instinct is your disability doesn’t define who you are or you can do anything you put your mind to. Yes, I’ll give you that my disability doesn’t define who I am as a person. What I will never understand is why you would tell me I can do anything I put my mind to. No, it’s not true and if you only knew some of the challenges that come with my disability that thought might have never come to your mind. When you’re disabled there will be some things about your life that will change for the better while others will just not be the same at all and disabled people have to be willing to accept that. My disability has given me many opportunities that I wouldn’t get if I was abled but there are far more things that have been taken away from me because of my disability than most people realize. I am not one to dwell on all the things you can’t control but as a disabled person, I think it is important that you understand all the things that are different for me because of my disability. I hope this open’s your eyes and gives you a little more understanding of how the lives of a disabled person are different!
The desire to wear crop tops- My doctors have done a lot for me and do their best to help make me as independent as possible but there are some things they cannot fix. If I had six-pack abs you wouldn’t know because I am uncomfortable with wearing any type of clothing that shows a lot of skin so I would have no interest in showing them off. There is one major reason for that I have two stoma’s that I am paranoid about being exposed. One is called a vesicostomy which is a little opening created by a urologist on my lower abdomen that connects to my bladder giving me the ability to empty it through catheterizations. The other is called an ACE which stands for Antegrade Colonic Enema and that allows me to do a full washout of my colon and have bowel movements every couple of days on my schedule. This process is very time-consuming and can take anywhere from one to three hours so I don’t look forward to it but it has helped prevent me from getting constipated as often so I don’t mind doing it. I can just remember before having these stoma’s how frustrating and how miserable I got when I needed to wait to get help to go to the bathroom. There are days I wish I didn’t have these two stoma’s and sometimes I wonder what life would be like without it but those feelings are usually short-lived. My life is infinitely easier because of them and although they. For those of you who have an ostomy bag or know what it is what I have is not the same thing.
Desire to have children– When I was a child I wanted like three kids minimum but as I grew older the desire to want them has decreased. Children are a blessing but because of my disability, it will never be an option. If I started dating you would never see a person get on birth control so fast! My disability has many challenges and adding kids to the mix of what I currently struggle with is not something I think I could do well. I would have to hire a full-time caregiver to help me raise my child and I don’t know about you but unless I personally knew that person that is something I am not comfortable with doing. In high school, I took a parenting class to get the feel of what it is like to have kids and one of the assignments was that for twenty-four hours you had to take home an electronic baby and when it started to cry you had to put a key in it’s back and figure out what was wrong with it. Within an hour of having it the abuse light went on because apparently, you aren’t supposed to hold a baby upside down when they are crying! Who would have known? After taking that class for the longest time that experience convinced me I didn’t want kids but then I realized it wasn’t until I became an aunt that I realized the real reason I didn’t want kids was because I face too many challenges. Just so you know I don’t treat real kids like I treat electronic babies so it’s perfectly safe to leave your children with me!
Enjoying unhealthy foods- Sometimes I really wish I could explain to people the anxiety I get whenever I eat sugar. Like I said earlier when you have Spina Bifida you there is a high likelihood you will have loss of bowel control which can be maintained through things like the ACE but they aren’t foolproof and you can still get constipated or have accidents. Everyone responds differently to different foods and if you are struggling keeping a food diary might help you figure out what foods cause you to flare. Eating certain foods for me is more stressful than enjoyable so if I can I try to avoid them as much as possible. Some people you know will be understanding of your situation if you have a flare but most people will not and if you are out at a big event my advice to you is to eat something healthy you know won’t cause to flare or eat before you go!
Ability to work my dream job- For those of you that know me you probably are aware that I have been on tons of job interviews. The sad thing about it that even with all the job interviews I have gone on I have never gone on one that I actually thought to myself “I really want that job”. After I go on an interview I may have some wonderful things to say about it but chances are I am not as enthusiastic about that job as you think I am. If I based all my job search decisions on whether or not it was my dream job I’d never find one because the reality of it is my learning disability makes it so I will never be able to work my dream job. All my employment decisions are based on whether or not the job is stressful or if I think I am capable of doing it. Whether or not I think I will enjoy it is not important to me.
Living on my own- Seeing kids my age move out, and excel in their career makes me sad sometimes because I will never have that. I am not in a financial situation where I could move even if I wanted to and even if I was it would take a lot more work. There are things I would have to take into consideration that abled people would not even have to think about like how am I going to run my errands or is the apartment accessible? For me personally, I might need someone to come in and help run errands because some things like grocery shopping I can’t do on my own. Unlike abled people I can’t just decide I am going to move out once I have the money, there are a lot of other things I would need to consider if I want to be successful.
Doing whatever workouts I want -Some abled people do not understand how easy they have it when it comes to working out. Working out with a physical disability takes a lot of planning and when you have a disability to think about it is much more challenging. Some exercises may not be possible with a physical disability and if they are it is not nearly as effective than if you were abled and could do them with proper form. If I wanted to get a good thigh burn doing fifty squats may not be a good choice because I can’t do them in the way you are supposed to and will probably not get the same results. For me, working legs is almost like a waste of time unless I wanted to go on a walk (which I never do) or had leg exercises incorporated in my ab workouts which happens a lot! I often do wonder what my workouts would like if I didn’t struggle so much because there are so many exercises I can’t do that I wish I could. Sometimes I do wonder would I do those exercises if I could or would I do something completely different?
Having a disability is not a sad thing and when you tell a disabled person they can do whatever they put their mind to it is likely that person will just roll their eyes because it’s simply not true! No matter how you word it that statement is never true because when you are disabled there are some things that are just not possible. You have two choices either sit around and feel sorry for yourself or focus on all the things you can do not the things you can’t. The choice is yours! In my experience, the moment you learn to let go is when you will find true happiness. You can’t change your disability but you can’t change how you react to it. If you are disabled what is something that is not the same for you? What have you done in replace of those things?