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.