I was in 6th grade before I could spell music.
I was reading on a “college” level, and spent a lot of my time doing that reading. But I couldn’t spell “music.” I spent about 4 years living through of variations on the following conversation:
Sibling to a new friend: This is my sister Savannah.
Sibling: [Sometimes after I've rambled enough to get called "smart," sometimes not.] Guess what? She’s in [x] grade, and she still can’t spell “music”!
Friend: No way!
Sibling: Yep. Savannah, spell “music”
Me: [attempts several possible butcherings of the spelling of "music" becoming increasingly frustrated.]
This type of conversation left me so frustrated, I forced myself through that one word. Thankfully, with that one word down, my siblings stopped playing this game and let it be.
On my early educational records, it reads “Dyslexia” and for many years it was pointed to both appropriately and inappropriately as an explanation. Sometimes, the issue was more language processing, others fine motor skills. On some occasions it actually was possibly dyslexia, but from reading the experiences of other people with various learning disabilities it wasn’t anywhere near as often as it was said to be the reason.
I know that the difficulties I had learning to read at first- I didn’t read until late in 3rd grade- don’t match the experiences of other people whose late reading skills were due to dyslexia as much as they match other types of visual and language processing difficulties. Some spelling, though, I can see the places it does match- not completely, but enough to believe it’s a factor.
After a while, I came up with ways to get around it- work arounds in my brain when it comes to words and letters. To this day, I struggle to find consistent ones for numbers. So no, I don’t remember your number, the zip code, or any number of things. It takes me 2-3 years for a zip code that I write regularly, and a couple years when my mother changes her number. My sister has had the same number for 7 years, and this year is the first year I can consistently recognize it.
There are plenty of times, particularly under stress, when those work arounds stop working though. They are like any number of other skills- they get harder when someone is sick or under stress. Lately, that’s been a little more common for whatever reason. I think it’s because of long term housing stress. My neurologist says I should ask my psychiatrist if my meds could be involved. I really don’t know.
What I do know is that spell check is amazing for me on a number of levels. And I have learned to spell a wider number of words flat out thanks to it than I miss. But sometimes spell check on a particular program doesn’t work- it flags terms that are spelled correctly, or it misses that a word is wrong.
Usually it’s fine. I fix it, and I’m on my way. But sometimes?
Sometimes I spell occasion “occation” and a particular program doesn’t pick up on it. I send something on, and then even the nice reminders leave me panicking.
It’s not something I can say “look don’t do that” because it is something that is needed, and it’s something I’m grateful for after the initial panic. It’s actually antithetical to my access needs to not have those corrections made in official documents, or in essays submitted places, or the like. I embrace that I need a copy-editor for certain projects, and that I can’t copy-edit for people because of my needs.
But there’s still a part of me that anticipates it.
“Savannah can’t spell. . .”
I don’t really talk about my mother on here too terribly much- though if you talk to me on facebook or twitter or any of the “social” media I do- especially in comparison to talking about her ex, aka Rick aka her second husband. But there’s a reason for that- because she for her part did well with me. I’m not saying she’s perfect- she does indeed struggle with some of the attitudes that she’s internalized about abilities and supports- but she was still amazing.
Last fall, my posts about intent, and about how the parent movement tends to erase or drown out Autistics, had one person remark that I was arguing that parents are a part of the problem. Actually, I think it was “are the problem” but . . . yeah. I don’t think parents are the problem so much as that their voices and ideas are too often prioritized of that of the PwD that they are parents to. Indeed, I recently attended a rally full or parents with great intentions- intentions of undoing the cuts to services in my state. But they felt it was okay for them to over talk the time limits when self advocates didn’t, to use patronizing language about their adult children, and to erase the efforts of self advocates with Developmental and Intellectual disabilities around some of the laws that protect our rights. Really it’s a perfect example of what the problem is- that we live in a society where these things are considered okay. But I digress.
My mother worked pretty hard at advocating for me in school as a kid. She even got heavily involved in advocacy around service provision, as the county tried to say that I would need shipped to a residential facility (which is an institution for youth, essentially) to have my needs met. My mother worked super hard to keep me at home and in school, even when we were being told that even graduating high school might be a “pipe dream.” (Hint: I’m the only one of my siblings to have graduated HS. My brother has a GED, and my sister is still working on passing the GED.)
She also, during the time that my behaviors were the most difficult until she married her third husband, was the primary wage earner in our household.
But beyond all this, she instilled some of the basic principles that have gotten me to where I am. She respected my wishes and goals about school, and later on- around age 14- about medication. She encouraged me to be involved in advocacy, including asking me to be on my first panel at age 12. But beyond that, she taught me a bit about how it is our civic duty to work for what is just.
Now she has her own needs disability wise. She can’t do the driving she used to without being in extensive pain. She has to do a lot of self care to stay off of medications. While she supports when and where she can, she actually isn’t able to do as much as she used to. And that is fine- it has to be, if we are living the sort of life that matches what we believe about access and self care and love.
We are relearning what it means to support each other as our needs change and grow. I’ve had my skills and abilities vary greatly in the past 7 years. I can actually articulate the things that happened to me better, and as a result my mother is learning more and more about what happened when she wasn’t there, and what I’ve tried to communicate but couldn’t in the past.
At the same time, though, I’m not as easily verbal as I was. It takes more effort to say things verbally, even though I have more words and a better grasp for them now. While I don’t pretend I have nothing to say to avoid letting people know Words drop out on me, they do drop out more often. (We think this is because of the amount of stress I’ve been under with housing). I also have had my anxiety around phone use spike.
When I was little, I pantomimed what I wanted when the words couldn’t come, and she thought it was a game I played. Now she knows, and I’ve had a chance to explain that it was never a game on my side. As I got older, if I couldn’t verbalize what I wanted I pretended that I didn’t want or need. Now, I can send her a message on facebook at any time, and she will respond no matter where I am- across the country or across the room.
Over the past year, my relationship with my mother has shifted around, become more complex on some levels and yet simpler on others. Simpler, because we now both know that the standards for communication out in “normal” land aren’t suitable. Complicated, because her roles have changed along side her needs. And while her role shift went smoothly on me being my own advocate, being able to balance asking her for help with respecting her own needs as a PwDs isn’t smooth at all.
When I contact my mom over facebook, for a long time I had to initiate. And then one day, from across the room, she sent me a message asking me a question. It wasn’t a complicated one, it didn’t need an elaborate explaination or links to make sense. Indeed, it was something mundane. But the fact that she was willing to ask it in what is essentially “my” lanuage instead of hers and waiting for an answer? That was pretty amazing.
I love you mom. And not just for your kitten pictures.
I reached out to a number of bloggers to write about mothers, relationships with parents and parent figures of choice good *and* bad, and what it means to express familial (family) love as/with Autistic and Neurodiverse people. I will post links later in the week, but this is both for our community and as a huge mother’s day gift.
I’d also like to remind everyone that it’s International Autism Acceptance Year (IAAY) April 2012-April 2013, and that all this year, various community members will be doing projects around it, thanks to the organizational skills of Paula Durbin-Westby.
I didn’t think I’d have something to say today. I haven’t been able to organize my thoughts in the way I need to to write here, and I have a list of things I need to get done that. . . well, it just hasn’t thus far. I thought that I wouldn’t have something to say for Blogging Against Disableism Day, or at least not something that was worth posting here.
I was wrong.
I just finished reading Amanda B’s first post for this year’s BADD (she wrote two) and . . . Well, I found myself upset. And not just because her posts are on distressing issues around abuse by caregivers, but because I had just recently been trying to articulate some of the things she wrote about being conditioned to believe our support needs are unreasonable. Amanda was talking specifically about issues with staff and care givers being abusive, and about the cultures that support that within provider systems. But the conditioning is something I’ve been working on fighting out of my own head, and I’m someone who isn’t getting adequate supports or services. (I have less extensive support needs staff care wise and equipment wise as my health and skills are very different from Amanda’s, but that doesn’t mean I don’t need supports.)
I’ve been depressed lately because of how long it has been taking for me to get housing, and because the type of support that I need to navigate that type of system it is more complicated. As a result, my family has been truly over taxed in trying to make sure I’m not living under a bridge or someplace where predatory individuals would have access to me. My family members have disabilities of their own to provide self care for, as well as not really having the financial resources to support me in a way that respects their own needs. It’s not that I have super intensive care needs in general- once I have a place and can set up my charts and other adaptive methods, I might need a couple hours a week to help coordinate bills, cleaning schedules, and transportation. But they are still needs that are amplified by not having a permanent home that I can set up as an environment that is suited to developing or maintaining my Daily Living Skills.
However, I also know that I cannot cope at all when I don’t have some obligations or responsibilities to meet. Accessible, meaningful involvement. Unfortunately, none of the things that are immediate to my situation are things I have the skills to navigate. Instead, online things and meetings and disability justice work are the things that allow me to cope, to endure not knowing for sure where I’m going to be sleeping next week.
But my needs for this sort of meaningful activity, and the relatively easier and less expensive to provide supports I need to do them, are characterized over and over as unreasonable. Unreasonable in light of how I haven’t been able to get housing. Unreasonable in light of needing someone to work one-on-one uestion by question with me to fill out assistance forms, or even in writing an advanced directive when I know basically what I want.* Unreasonable because I need some help in managing my money, because when I try I end up just not buying the things that I need and doing without until it hits crisis even when there’s money for something.
*That set of needs in and of itself is called unreasonable in light of how “smart” I am, how I can be involved in national level policy review, how I scored so high at English in high school. That I can write and review policy somehow means I must be able to apply each step to my own life accurately, without assistance. That there’s a different set of neurological skills between writing big things or reviewing big things and applying those to a very specific case in a way that uses standards measured from the outside is not fathomable.
This past weekend, it didn’t work out that I could go to a family member’s. So I went to the cheapest hotel in my county with wifi, and checked in. (I even agreed to watch my niece on Friday night, as she and I get on well and my sister needed the support that having someone else handling her would accomplish. The sort of support that if the dad had been willing to provide when it is needed two nights or so a week, wouldn’t be a problem.) But when the hotel’s internet was not operating appropriately, all the things that I’ve been told- the things I’ve listed in a heavily limited way above- came into my head.
That daring to have obligations to fufill was an unreasonable thing for me to have done, even though they are obligations that aren’t terribly extensive. That needing reliable internet access because I had been asked to complete one thing was something that somehow made me an extra burden above and beyond. That contributing at all can’t happen somehow when you can’t hold a job that supports yourself. That while my disabilities do not make me something aweful, that my daring to participate in the ways that are accessible to me somehow does.
I know that it is all programming, that it is the sort of behavioral training in action that Amanda is talking about when she says that you don’t need locks or restraints to practice seclusion and restraint on someone. I am someone who has picked apart the details of how society trains us into compliance for the ease of others. How being a part of a marginalized group means that we have epic fights against the things inside our heads in order to survive. I’m someone who films myself daring to reject indistinguishability, who knows that we make tiny revolutions by demanding that our determinations of what we need are listened to. Someone who lives and metaphorically breathes disability rights.
And I’m still digging out the conditioning in my own brain that reduces me to a something, to a burden and an unreasonable. My mother is still unraveling the complexity of what access is vs “enabling” (which is a complex mess to dig around in itself). My sister is still without her GED because when she has to directly interact with her acquired learning disabilities, the things she’s internalized over the years both when she was a norm with a disabled sister and after she acquired disabilities collapse her incredible demonstrations of self confidence.
When we talk about the impact of disableism, we are talking about trauma, a trauma that can be obvious enough to shriek or subtle enough to make being explicitly told that others will help us access our world a shock, a pleasant surprise. We are talking about outposts in our heads, and the outposts in other people’s heads.
We are talking about how some nights I lay awake worried about the day when my niece no longer thinks I’m awesome, no longer misses her buddy Skylar, no longer meets a family friend’s kid at his level of interaction because it seems horribly inevitable that she’ll learn the memes of disableism in our culture. Because even with some of the amazing bits of joy and hope that people share- Dave talking about Ruby’s dance class, Brenda talking about her love for her son as a whole person- it’s hard to believe that the hope that it gives will turn out.
It is so hard to believe something that amazing can last when you live in a world where it’s socially acceptable to exercise disableism, to raise children with disabilities around language about brokenness and tragedy into adults whose hearts break daily because it’s hard to unlearn that stuff.
But somehow, it is still something worth writing, and fighting, for.
(A different, positive, musical Something to play you out.)