30 8 / 2014
I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:
- Advocate: Disability acceptance is really important. Disability is part of who I am.
- Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
- Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.
By acceptance, we do not mean either of those things. What we mean is more like this:
- Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
- Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
- Childhood isn’t something you can flunk
- Magical thinking will not help, and neither will centering your life around searching for a cure
- Children with disabilities who live to adulthood usually become adults with disabilities
- They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
- It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
- You can have a good life and be ok with your actual brain and body
- Imagining that you will have a fundamentally different body one day makes everything harder
- Life gets better when you accept yourself and work with your body and brain rather than against it
- Shame is not a cure
- Disability is not an emergency, and panicked intense early intervention will not make disability go away
- Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
- But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
- Their life is already worth living and they don’t need to be cured to be ok
- Don’t panic
tl;dr Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.
28 8 / 2014
This is a CRUCIAL read:
My sole purpose of writing this is in hopes to educate health care professionals how to treat properly treat women with disabilities.
I am a twenty-five year old woman with Athetoid Cerebral Palsy (CP). This type of CP affects my ability to control my muscle movements, makes my speech a little difficult to understand, and affects my balance. As a result of my balance problem, I use a power wheelchair to get around. I had to get an MRI, so I went to a very well known hospital in New York City where my neurosurgeon works. Because of my CP, I had to be anesthetized in order to do the MRI. As usual, the anesthesiologist had to ask a bunch of questions before they put me under. They told me that they were going to ask my parents questions and I replied “okay but I can answer them myself.” The anesthesiologist seemed to understand. So, they proceeded asking routine medical questions. Then, they asked me if I lived at home with my parents. The anesthesiologist said “The only reason why I ask is because I need to know if there is any chance that you may be pregnant. Is there ANY chance that you might be pregnant?” I was so mortified that she asked me that in front of my parents. I replied “No” once I was able to recover from the shock. My Mother answered the original question and told them that I dorm at a college with an aide. The anesthesiologist then proceeded to ask if my aide was male or female, as if they were implying that the only way that I could possibly be pregnant was if I were raped. My Mother replied “Female.” The anesthesiologist then asked if I was watched all of the time. My Mother replied “Yes.”
This anesthesiologist was downright wrong for asking me if I could be pregnant in front of my parents. i am over eighteen years old. She should have asked me privately like they would have done if I weren’t disabled. What if I was living with a boyfriend, was pregnant, didn’t want my parents to know and planned on giving the baby up for adoption? They couldn’t use my speech as an excuse. The anesthesiologist could have used an alternative way to get the answer such as “Raised your hand if you could be pregnant.” Secondly, assuming that I cannot have consensual sex is preposterous. if I’m intelligent enough to attend college, I can decide whether I want to have sex or not. Disabled women are perfectly capable of being in relationships. Lastly, just because a disabled woman has an aide who watches her all of the time doesn’t necessarily mean that the disabled woman is not having sex. Theoretically, her aide could be helping her and her boyfriend facilitate sex for all the anesthesiologist knows.
This wasn’t the first time something like this has occurred with a medical professional. This is not only frustrating and embarrassing, but it has turned into a serious health risk that can be easily avoided with training in school on how to properly treat people with disabilities.
27 8 / 2014
16 8 / 2014
"Since I tweeted my distaste for the “miracle” meme, several able-bodied people have helpfully explained to me why it is, in fact, funny. One explained that it’s a joke and that jokes work because they show us something counter to our expectations. But watching someone stand up from a wheelchair is only counter to our expectations if our expectations are based on an ignorant and ultimately bigoted understanding of what disability is and what wheelchairs do."
15 8 / 2014
"What is it about our culture that has led people – especially women, it seems – to view receiving compliments as an awkward experience? I notice time and again that when I extend a compliment to someone, the person deflects, or even outright rejects it, rather than accepting it."