The Facebook status post that started it all. Read the comments. They are extraordinary.
https://www.facebook.com/BrightLotusMoon/posts/10151585193220684So, lately I have been seeing a whole bunch of bizarre, confusing Internet Things about Finding A Cure For Cerebral Palsy, in the same fashion of Finding A Cure For Autism.
What is even worse is that I see people trying to compare autism to cancer when talking about cures, which is so fucked up I have no words.
So, as a person with cerebral palsy and various other disabilities, including one that shares similarities with autism, I have thinky thoughts.
(And no, Fibromyalgia is not included in this, since it is a different rant entirely, so I will not bring it up. I am only and specifically going to talk about Cerebral Palsy and Autism Spectrum Disorders here, which I cannot and will not compare to conditions like epilepsy or diabetes or autoimmune diseases or such.)
This is what I find so funny about people who yell about finding a cure for neurological conditions like autism and cerebral palsy. A "cure" generally means wiping out or eradicating a harmful disease. *checks self* Except that I'm not dying. All the autistic and cerebral palsy-affected friends I have aren't dying. I know this is weird logic. I know that "cure" has many other definitions. But I don't have a disease and I don't want a cure.
When someone says, "There must be a cure, [condition] is terrible, just ask [my friends with disabled kids who are having issues interacting]!"... I have to wonder, do they want the cure for the disabled people, or do they want the cure for themselves, so they can breathe easier knowing that the disabled people will fit cleanly into a neurotypical world? Oh, I know, I am going to incite some anger here.
I've seen how hard and horrifying it can be for families of autistic people and people with cerebral palsy when the families have no idea what to do and feel helpless and hopeless. I have cerebral palsy, I have family and friends with cerebral palsy, and I have several cousins and many friends with autism. But the old argument of "Just ask So-And-So whose child will never talk, etc" does nothing to tug at my heartstrings. I find it to be a very weak argument.
Yes, disabilities suck. Disabilities are fucking hard. They eat away at you. They fill you with guilt and worry and fear. But you know what? I'm not dying. I am strong as hell. I am hardcore. And this disability that people seem to fear and hate? It has given me some specifically amazing, beautiful perspectives on the world that I'm not sure those people have.
Let's ask the actual disabled people if they want cures. Come on, ask us.
Many of us might actually say yes. Many of us might firmly say no. Many people might decide they want to be treated or "improved" just enough to be able to interact better, walk better, have thorough conversations, etc. If they want cures, awesome. If they don't, awesome. But I feel as though certain charities and groups championing to "wipe out Insert Disability Here don't often take into account the actual opinions of the majority of people with those disabilities. Because yes, while it is all we have ever known and a cure may make us feel better, it would also remove a core part of who we are, something so hard-wired into our brains that we live and work with it in a sort of surreal harmony. We may bitch about symptoms, we will get pissed off at ourselves, we will lash out on bad days. Eradicating that entire condition may make it seem as though we would be better off, happier, easier to be around. But we don't know that. What if we don't like it? I don't know. Nobody knows.
In the end, we have our own voices, and it has become apparent that we need to start drowning out the voices of people who don't understand us enough from the inside. I am speaking out. I don't want to be cured from any of my disabilities. Treated, yes. Slowly healed to make myself function better, yes. Able to fully manage symptoms, yes. But a cure? An absolute cure? No thank you.
And remember: Having a cure as an option for everything would be awesome. But I refuse to tolerate it being forced upon someone or used as a soapbox for someone's rant as to why it should be given to everyone even if they don't want it.
And those are my thinky thoughts.
/I hate writing controversial posts like this, but, well, nobody I know right now wants to actually be cured. Show me some disabled people who personally want a real honest cure, and then I'll say, "Okay, awesome! Let's start scienceing! Let's get to work! Then we can have the option! Yay science!" I'm open to everything. Just not being told that my disability absolutely needs a cure for the sake of the people who are not disabled.
Also, I must copy a comment a friend on my Facebook that made me melt:
"And this is why you are one of my favorite disability advocates, because no one else calls those kind of campaigns what they are: patronizing. Well meaning, but patronizing. As a fairly high-functioning Aspie, and someone who's dealt severe OCD, anxiety and depression as long as I can remember, I would not take a magic pill that eliminated my experience with these disorders for a million dollars. Yes, the symptoms suck and I have and will continue to manage them with a combination of holistic and allopathic treatment options, but to completely erase them? No. Each one has shaped who I am, and I happen to like that person. Thank you for voicing this."