some more thoughts I wrote about nonspeakers and intellectual disability:
I want to live in a world where people understand motor issues and no one gives us IQ tests that set us up to fail, and in that world probably less nonspeakers would be diagnosed with ID. But more than that I want to live in world where being assumed to be intellectually disabled is not the end of the world, is not a traumatic life sentence we feel a desperate need to cast off once we can type. Because growing up as a kid with an intellectual disability is not such a scary hopeless violent experience. Because all our thoughts are respected, we all can learn and communicate and choose our lives be treated as full people.(At worst, maybe ātreated like I have IDā means āBefore I could type, people explained things simply or with visuals that I didnāt need and it was annoyingā , not āI was treated like a toddler who could not want or feel anything whose life could not be my ownā. )
I want a world where people care about what we want and think it matters , and we donāt need prove anything to get the support we need to reach our goals. Which means nonspeakers can graduate from college and be religious leaders and get our work published and write poetry with fancy words. But also, where that is not the standard and other lives are not seen as less. And where we donāt have to say our wants and dreams in perfect language so people think we are capable of having them at all.
this part is in response to a discussion about this post by Nigh,functioning.autism:
Will be honest: I would not have noticed the problems in this post on my own. I paid more attention to the āitās not your faultā message for parents. I prefer ādonāt feel guilty because its the system, not youā to ādonāt feel guilty because your speller is wise and empathic and will forgive you immediately.ā but I wish I saw the same amount of āapologize to your childā and āitās okay to be angryā affirmations for nonspeakers. I donāt see many posts telling parents itās ok to feel guilty , but they need to process their guilt separate from us. It takes a long time to come to forgiveness sometimes after a life of trauma. And many of us never do. Itās a big reason some spellers never openly type with our parents , the resentment and trauma is just too much. But that always gets simplified to ātheyre dysregulated because they want to type with you more than anyone so their body resists.ā Hereās a quote from the Spellers Guidebook ārarely if ever does a new speller speak out negatively about their parents, they are grateful for parents introducing communication and the past is forgiven on the spot.ā A lot of times that comes from fear and not wanting to have our communication taken away. and this creates expectation that not angry not hurt not terrified not have all the feelings that complex trauma survivors have. we need both space to process that separate from our parents, and to have honest conversations with our parents about our relationship and about the past. After learning to type I still needed to learn how to use my voice to be brave and assertive to say āyou hurt meā to the people I loved most. Thatās a communication skill more important than writing a college paper. I know itās one that most non-disabled people struggle with too.
But this post is not as obviously bad compared to everything I see in the spelling community that is active hateful disowning of people with intellectual disabilities. but I see how it fits the pattern and that is something we all have to work on disrupting. I am sure even some of what I write ends up fitting the pattern even as I try carefully not to.
I want to ask for compassion for how hard it is to break that pattern, especially for spellers who have known it our whole life who were given ānot IDā as a key to our survival. It was so upsetting to realize that the spelling community at large has a smaller vision than mine for what freedom looks like. But there are also many spellers that share my vision for real freedom. I think people can share that vision and still use the language theyāre used to, like ānonspeaking is not nonthinkingā and āwe are in hereā and even āwe donāt have IDā. Just like a lot of our language, they are not always literal. They are like gestalts for that whole idea of a world where we are treated as human. And the type of āeveryone is human no matter how they thinkā that we are moving towards in this group is so rare to come across. Most of us are gatekept by our supporters into the spelling world alone, away from the big disability community or even the big AAC community. Many of us do not get the chance to see how much we have in common with our peers with ID. And many parents of spellers donāt let their kids have that community , because we are ātoo goodā for a life with other developmentally disabled people in it. I have lost touch with most of my old classmates with ID and most do not have phone numbers or access to the internet. And DD community day programs or art groups are too risky and trauma inducing to meet people in. The chance of being infantilized or abused or just bored is so high.
I understand impact over intention. But, when a nonspeaker or someone close to us is saying something like this, I can usually feel what is underneath the words. Sometimes it is truly anti-ID a need to separate selves from the other, the disabled people even more below us. That is not ok. We can also be so ableist towards those who remind us of our past , or we see as ābeneathā us. I read from many spellers and parents / CRPs who are choosing between wanting freedom for all nonspeakers and the horrible fact that the world rewards us for leaving some of us behind, it is easier to reach our goals in life if we escew disability. I choose not to share community with spellers who do that.
But sometimes the meaning underneath is āwe are all humanā is āno one should be treated like I wasā, all the true freedom ideas we are talking about. Those two people can use the same words, because we are passed these easy scripts to use claim our humanity. sometimes to tell the meaning underneath I need to know who the person is, have someone read me their other writing, learn what ideas they are working with and what communities they are in. That is not easy, and I ask members of this group not to dismiss our writing because you see red flags for exclusion in our language. Yes, there is a pattern , but each person means something different when they follow it , and speakers owe it to us to figure out what that meaning is before they decide it needs to be corrected. I donāt think anyone in this group is doing this, but I want to be sure that this does not spread into frame spellers as some elite disabled group who are being āhorizontally ableistā , as I have seen online sometimes ( on Tumblr especially). We are traumatized people who are denied access to information and told that we must accept a fixed narrative for others to accept our personhood. And have seen posts that are framed as talking TO nonspeakers by people not in our specific community, usually autistic people who became nonspeaking as adults and want their own cognitive based language disabilities recognized, saying stop doing mind is fine stop being ableist and erasing us. Without understanding that so much of that is being spread by those in power and repeated by us because its that or being non-human againand we donāt have good models for how not to. Though we have a few great ones ( I really appreciate what Niko Boskovic writes about learning from disabled people with as many experiences different from his own as possible. )
I would really like to change the script and model other ways for us to claim our humanity, but understand that many nonspeakers and our allies have talked in these ways for years and will take a while to change, and what they have to say still is worth hearing.
