My personal thoughts…
This blog entry does not speak for the entire disability community; like other marginalized groups, we are not a monolith. Even in the subsections of the disability community I belong to. I speak about my experience and my knowledge. This is my opinion and what I have spoken about to other disabled individuals. For the record, I do not want to cure my Autism even if they gave me the choice. Chronic pain is something I don’t want. Currently, I do not have a good relationship with my body. As I do not understand of what is going on in my body (example: being hungry or full but I cannot overeat). I would like to not experience headaches three or four days a week. I wouldn’t change who I am for the pain to stop. As a child, I felt like I was a complete disadvantage. If asked as a child or teenager, I would have taken that cure to be just like everyone else, not to be different now. That is so far from the truth
I don’t want to think like the majority. Albert Einstein, who thought to have been to be Autistic once stated: “the world will not be destroyed by those who do evil, but by those who watch them without doing anything” (1953 letter). A reason for not wanting a “cure” for a genetic disability is that many Autistics have a stronger sense of justice and loyalty. These qualities are very important to me. I really feel that no one person is better than the next person. Negative attitudes and stigma towards the disabled community may actually be why one person may want a cure, not the disability itself.
Throwing a blanket answer would disservice the disability community. I would agree that diseases such as cancer should find a cure. As it is painful and kills many people all over the world. It makes sense to look for a cure for diseases that are painful and degenerative. I’m talking about disabilities that are not moving towards a shorter life span. Accepting who they are is more important than a cure.
Did you know Autistics and Attention Deficit Hyperactivity disorder (ADHD) individuals are at a significantly higher risk of mortality?. Autistics without an Intellectual delay, or as I prefer to say, ‘those with lower support needs’ (or learning disability in the United Kingdom) have similar health issues as Autistics with an Intellectual Delay. The only difference that was established is that the Autistics with the lower support needs had significantly higher suicidal risk and higher occurrence of comorbid mental health conditions than did Autistics with higher support needs. Now I ask, would this be because of the narrative from parents and agencies alike saying that “Autism” stole their child? I am not sure if I want to. Or is it the combination of Autism and Intellectual delay they want to be cured? That they cannot accept us for our wonderful selves.
Shelley’s Younger Sister …
In the past, individuals asked it of me “have you ever wondered what your sister (who has an intellectual disability) would be like if she was normal?” I have two responses to this. I just do not think like this. The other reason is not only would my sister’s life be 100% different, so would mine, so I could not fathom this change. She is wonderful the way she is. There is a blurry line between who is the teacher and the student. With the thought of quality of life, she is actually healthier and happier than I am. The second response is “What is normal?” From my observation, it is not a human trait but a setting on machines. Who decides what is normal? I don’t think anyone should have that duty because they always excluded anyone.
Cure?
The cure narrative also leads me down the path of not understanding parents or other caregivers of disabled children. I understand that there is a grief cycle, as it is a loss of the child the parents thought they were going to have. Parents who have not accepted their child for who they are. I get grief does not have a timeline and is not linear and is difficult. When being stuck in the grief cycle, one is missing out on the wonderful living human being in front of them, not of an image or a thought of a human that only existed in one’s head.
My sister and I have the right to live and exist in this world. This can also be harmful when going down the cure route for genetic disabilities. Are we trying to create a world like Gattaca (a science fiction movie, circa 1997)? Why is there a need for every human to be the same? Our differences in story and experiences provide a different perspective from one another, so why must there be a monolith?
Take away…
Why do not want to be like everyone else? I find I like not thinking like everyone else. When spoken about, I say that I have disabilities. It seems attitudes in society and in accessible environments or unwilling to accommodate are harder than my Autism. I find it helpful that Autistic and neurodivergent individuals come up with different ideas and ways to work a problem. Sure, I have my good days and bad days, but I would not change it for anything or anybody.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774853