Recently, I was in Depoe Bay to celebrate my nineteenth birthday. I love going to the coast with my mom who is the planner of all things and usually runs a little hot in terms of patience. I see her relax visibly as the ocean draws closer, and we always have a great time.
This trip was the whole family in one motel room, and everything that could go wrong did, including me tripping on the sidewalk and busting up my face and nose. It was not at all fun to have happen, and more so in a different town where we didn’t know where anything was. The scariest part was knowing that Newport was in the midst of a COVID-19 outbreak, and we might be exposed to it while getting treated.
One thing I didn’t have to worry about was having to get treated on my own. Let’s say I was a speaking person who got hurt and needed care in a hospital. I am old enough that I could be alone and make medical decisions for myself, and it would probably be okay. But as someone with speaking challenges, I wouldn’t be able to advocate for myself or even give consent for treatment without communication support. Also, I know how people regard me when I am unable to communicate: they treat me like I am stupid, like I am not a person; as if my humanity was somehow less than their own. Most of them are good people who are simply unaware or have never been exposed to non-speaking individuals, but it’s pretty universal among the general public.
It seems like we have to prove our worth in just about every situation, especially when it involves people who make decisions that impact my life. For example, I had to go meet the head of special education who initially said I couldn’t use a letterboard in class because it wasn’t an approved technology. Once we started to have a conversation about this, it was no longer an issue because I was using the letterboard in front of her, and she saw me as someone who was competent. I have so many examples of this scenario, but none as threatening as a potentially fatal visit to the hospital. It seems weird to hear how a woman in Oregon City may have suffered unnecessarily because of how her disability was perceived – where hospital staff visibly and verbally demeaned the quality of her life – rather than the actual cause of death.
I love my life, and would not ever consider not being autistic as more desirable. Being autistic is as intrinsic to who I am as my eye color or the way I smile. However, I have repeatedly seen my identity pitied and devalued, and it is because of that pervasive ableism that SB 1606 was necessary. It means it’s my right to have someone in the hospital with me, and that I can’t be asked to sign a Do Not Resuscitate order if I am admitted. I don’t want someone who is supposed to keep me alive harboring an unconscious bias against the value of my life. And if they do, then let this law keep me alive a little longer.