Parent of a child with disabilities

I was at a loss for what to write this week. I am just so heartbroken and angry and nauseous and frustrated. NO ONE, I repeat NO ONE, is better or more valuable than ANYONE else. Not based on race, gender identity, sexuality, religion, heritage, education, wealth, ability, health or any other factor. Why is this such a difficult concept to grasp? What is so complicated about the golden rule? I get that centuries of hate, bias and policy cannot be cleaned away simply because they are factually irrational - that this process takes significant effort and time because those in power cling to power. Still…

Lately, I have felt very reactive - reading books, watching interviews and documentaries about marginalized people’s experience - after atrocities against these populations are widely publicized. I have begun to own my inherent biases and am continuously working to grow and be better. However, I would rather be proactive, and am starting with a marginalized community that is incredibly close to me, but that I cannot claim to be a part of: the disability community. As parents of children with disabilities we take up precious space here: We are fierce advocates and many times our disabled children’s voice, but we are often not ourselves disabled. This means we do not get to drive this discussion. It is important for us to sit back and listen to the community and follow their lead - this doesn’t mean advocating less or even more quietly, it just means listening first because our advocacy isn’t about us.

This week I read - and actually accepted - that the disability community does not like the term special needs. After all, it isn’t their needs that are special: to learn, to eat, to communicate. In schools we’re seeing a change to the term ‘diverse learner’ but among parent advocates we seem rather attached to our title as ‘special needs parents’. *Raises hand* Guilty! I had seen this written before and disregarded it, what else would I call myself? News flash, Kelly, it’s not about you! So, moving forward I will be using ‘parent of a child with disabilities’. Yes, it’s a mouthful and no, it doesn’t make for a simple hashtag but if I want to be the best ally to this community then it’s past time I listen.

What helped me wrap my brain around my own disability biases was learning about the medical vs social constructs of disability. The medical construct looks at a person to see what is ‘wrong’ or abnormal with them - this seems to assume that there is some ideal genetic or biological norm, which is ridiculous. On a cellular level we all have genetic variants and to the naked eye are biologically different from one another.

Next, we have the social constructs of disability. Where society deems that someone who can walk is better than someone who cannot because of the impediments the person who cannot walk faces. However, those impediments are social structures - buildings and public transportation can be made accessible. As lawyer and advocate Gregory Mansfield said, “I don’t need access because I have a disability. I need access because you have excluded disabled people.” To that end, if the playing field is leveled, whose to say that a wheelchair is any more a symbol of disability than say, glasses.

However, I still struggle with one not-so-small nagging issue. If there was nothing ‘wrong’ with Adelaide, if she was just right just the was she was, then why am I still adamantly trying to raise money to find a cure for epilepsy. Or why did I take her to 13 hospitals in 7 states to try and find someone who could help her? How do I justify trying to ‘cure’ her if disability is simply a construct of societal norms? I’m still working through this and have significantly more reading to do, but here is where I’ve landed for now: if the pain and suffering of the disabled person is a result of problems stemming from a medical condition(s), why shouldn’t we do everything within our power to try and heal the source of the pain? However, if the pain and suffering is a result of social conditions then it is not the person that needs to be healed but the society that needs to be more accessible and less exclusive.

I can value my daughter and see her worth as equal to any other person regardless of her perceived disabilities and still wish that she never had to suffer a seizure. At the same time, I can also advocate to make sure that educators have basic seizure training so that, should she have gone to school, it would have been a safer environment for her. These are complex layered issues with centuries of bias to unravel, but don’t take it from me, take it from the people living with disabilities. A few people to follow:

Peter Morley

Alice Wong

Judy Heumann

Gregory Mansfield

Karrie Higgins

Tiffany Kairos

August 2019