Please Stop Trying to 'Fix' My Disability
In our society, disabilities are often seen as things that need to be “fixed,” and, therefore, the person who has the disability is also viewed as broken. In reality, those of us who have the disability often celebrate their disability. We identify with our disability, and we see it as a part of ourselves. Without our disability, we would not be our complete selves, and in a sense we would then be broken. As a society, we need to stop looking at a disability as something that needs to be fixed. We need to stop asking the question, “What is wrong with you?” because in that person’s eyes he or she may just be perfect.
“I will never complain about my foot pain again because you have it much worse than I ever do.” “I am thankful I don’t have to deal with what you do. I would probably kill myself. I don’t know how you do it.”
Statements such as these are made to people with disabilities by able-bodied people regularly. What able-bodied people need to realize is that these statements are offensive for individuals with disabilities. They imply the individual with the disability is lesser than the able-bodied person, or that their body is not as good. It implies the person with the disability should be saddened or depressed about their disability, when in reality the individual with the disability could be very happy with their disabled body. Able-bodied people need to stop assuming that every disabled person wants to be “fixed.” In their minds, they may be perfect just the way they are. To suggest people in their situations would be better off if they killed themselves is extremely disrespectful. You don’t know the many talents an individual has, or the contributions he or she has made or will make to society.
I cannot count the number of times I have been approached while in my wheelchair by random strangers telling me they will pray for me to walk again someday. What they don’t know is that I can walk. I walk all the time, it is just very painful for me to do so. My disability is lifelong and is not going away because you pray for me to walk. My wheelchair ensures I can go out with my family and friends, go on vacations, and enjoy my life the way I want. Please don’t take that away from me and force me to walk because you think it is better for me to follow society’s norms than to live a full and happy life. My disability has led me to meet many wonderful people I would never have met without my disability, and it has given me a new perspective on life that one cannot truly know unless you walk in my shoes. I wouldn’t have it any other way.
Our society must get out of the ableist mindset that if people don’t walk they must be “fixed,” if they can’t hear they must be “made better,” and if they can’t see they must be “cured.” We need to quit thinking that all of these people must be miserable because they cannot live their lives “normally” like everyone else. That’s just not true. Many people with disabilities embrace their differences and accept their disabilities as a part of their identities. Some people are not quite there yet, and still need our support to help guide them through a difficult transition into a newly acquired disability, and that’s OK. The important thing is not to assume anything about someone if you do not know them. Just because you see someone with a disability, it doesn’t mean you need to rush to fix it, or change it, or make it all better. Just support us. Be there when we need help with something, and let us be independent when we don’t. We will let you know when we need help. Most of all, remember we are just like everyone else. We just get things done a little differently sometimes.
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I spent 16 years searching for answers to my mysterious symptoms, and finally at the age of 32 I got my diagnosis. 3-Methylglutaconic Aciduria with Mitochondrial Dysfunction. It’s a very rare organic aciduria that affects my ability to process protein, and affects mitochondrial function. I have multiple system impairments as a result of my rare illness including mitochondrial disease, muscle weakness, lung disease, gastrointestinal problems, urinary issues, dysautonomia, and neuromuscular disease. I live with my loving husband of 13 years and my fur babies. My hope is to bring awareness to the struggles of living with chronic, rare diseases.
marie-harman