It’s over.

{My fellowship} is over.

The class is making a piece of word art to give to the {institute}.  Everyone contributes words.  The words include compassion, inspiring, dedicated, empowering, diversity, thoughtful, ideas, hearts.

It is glaringly obvious to me that they are missing the words ‘disability’ and ‘advocacy’, but maybe that was my mistake to begin with.  Maybe it was my mistake to think that this year would be about disability advocacy at all, when in fact, it was not.

I do not contribute any words to the word art.  But if I did, they would not be happy words.  They would be words like sadness, despair, pain, isolation, tears, self-loathing, ignorance, naivete, fighting, adversity.

I could go on, but I am so very tired of crying.

I could go on, but I am so very tired of fighting.

At the beginning of the year, Inge announced that she was going to do her main project on the issue of Slurb, because nobody ever talked about Slurb and it was really important.  I said that’s great, but actually, the disabled community has been talking about Slurb for years.  In fact, disabled advocate X Y Doe wrote a bill about Slurb that we’ve been trying to get passed in the legislation for years.  Inge said, well, I’ve never heard of any of that.  None of my friends have ever heard of that.

I gave her X Y Doe’s number and email.  I told Inge how great X Y was, how much ze had contributed, how awesome an advocate ze was.

At the end of the year, Inge gave a presentation about how she had done work on the issue of Slurb.  And somewhere in there she said, ‘oh yeah, and X Y Doe had something to do with it, didn’t ze?’

“Um, no.”  I said.  “X Y Doe did not have something to do with it.  X Y Doe wrote the bill and has spearheaded the issue of Slurb for years.  X Y is the most awesome advocate on this issue, the expert, the person who knows everything.”

Then I had to leave the room, because I did not want them to see me cry over the fact that Inge never contacted X Y Doe.  Inge never listened to or consulted any actual disabled people about the issue of Slurb. Inge, despite the accolades that she received from faculty and staff, never thought for one second that disabled people were the real experts here.

And with few exceptions, nobody else did, either.

I shouldn’t be surprised by ignorance.  I really shouldn’t.  But things that my classmates did not know included: eugenics.  Pronouns.  How disabled people were the first victims of the Holocaust.  How ABA is abusive.  How person-first language is not preferred by disabled people.  What oppression means.  Why black lives matter.  Why Autism $peak$ is a hate group.

On and on and on the list goes.  I was often told that people were learning so much from me.  What I wanted to know was why I wasn’t learning from them.  Why I wasn’t being stretched intellectually, only emotionally.  Why the deeper discussions I longed for about history and politics and how they intertwine with oppression and race and economics never happened.  Why the mothers of autistic kids still saw me as nothing like their kids even when I exposed my painful past and difficult childhood.  Why people still judged what I understood based on my verbal fluency and ability to express myself in a classroom, when that really is not my best form of communication.  (Writing is.)

The learning goals and objectives of the various classes included things like understanding local and state governments, having a deeper understanding of disability issues, knowing the ins and outs of the US health system.  Honestly?  I do not mean to brag, but I understood an awful lot of that to begin with.  What I didn’t understand, what I still don’t understand, is how a group of such caring, seemingly-intelligent people can still, the majority of the time, still not get it.

What I learned this year included the fact that mothers of autistic kids often hate them and fantasize about killing them.  That autism destroys lives, ruins families, causes cars to crash.  I learned that my experiences are not valid because I am ‘nothing like their kid’.  I learned that everybody, but in particular white men, really, really, really do not like having their privilege pointed out to them.  I learned that nearly everybody would prefer it if you kept your comments to yourself.

This year, I learned that I know a lot, and that I am actually intelligent, but that intelligence means nothing when I lack the verbal abilities to get my point across.  I learned that people will laugh at your jokes, but not include you in the group.  I learned that the disability community is quite different from the disabled community, and that I infinitely prefer the latter.

This year, I learned that texting a friend under the table is a good way to give yourself the morale boost you need to sit through yet another soul-numbing discussion or lecture.  I learned that personality and type indicator tests most likely mean nothing because not a single test takes into account disability.  I learned that the world I live in, and the world I’m building, is a unique one, but not everyone will want to live there.  I learned that very often, I will be building it alone.

To be fair, there were good moments this year.  There was one lecture on diversity where I really, truly connected with the guest lecturer and I feel like our conversation was enlightening to both of us.  There was a trip to DC that was one of the highlights of my disability justice work so far.  There were projects I did and connections I made that will be invaluable to my further career development.  There was laughter.  There was friendship.  There was reaching out, there were people who did get it, if not completely, then definitely partially. Of the eleven other people in my cohort, I will be keeping in touch with two or three, and that’s not a bad percentage, I don’t think.

I just wish………I wish I felt that school had ended, not a battle.  I wish I could be enthusiastic in recommending the program to other self-advocates.  I wish that I didn’t have to explain to people that parents do not make good peer mentors for disabled people because of the definition of peer.  I wish that my thoughts towards the program were not so saturated with bitterness and sadness and anger.  I wish that the word {fellowship} tasted sweet in my mouth and not sour, unpleasantness coating my tongue like the blood from a thousand bitten-back words.

This is yet another of those times when I curse my wonderful autistic memory. Because the fact is that I cannot forget sitting in an office and being told that my facial expressions and tone of voice were offending other people.  I cannot forget being asked if I could, possibly, just count to three before I spoke.  I cannot forget the humiliation I felt when the accommodations I needed were pointed out as special, or the undercurrent of resentment that simmered just beneath the surface of the class.

I cannot forget, and I cannot help but worry, because, you see, these people that were my classmates are expected to go out there and be leaders.  They are going to lead non profits and be on boards and change the future, and they will do so, the majority of them, while having no real understanding of the importance of having disabled people lead the conversation on disability.

If anyone from the program ever reads this, I know exactly what response I will get.  It will, inevitably, be the same response I have gotten all year, mainly, that people tried.  That people tried and that they had good intentions, that nobody meant to hurt my feelings, that they liked me, really, that why don’t I think about it like this, why don’t I try to put it in a more positive light, why don’t I, why don’t I, why don’t I.

But just because someone likes you doesn’t meant that they respect you.  Just because someone is friendly doesn’t mean that they are kind.  I am tired of people telling me that I can change others by changing my own behavior.  I think it is high time that other people stepped up to the plate and took responsibility for changing their own.  And if I spend so much of my time and energy trying to interpret their behavior correctly, trying to give them the benefit of the doubt, then why cannot they ever do the same for me?

I am grateful.  I am absurdly paranoid about making sure that everyone involved in this situation understands that I am very, very grateful that I was given the chance to participate in this program.  And I feel on some level that, given I was paid to do this fellowship, that I shouldn’t complain at all.  But then I think: would I ever want someone I loved or even liked to go through what I went through?  And the answer is a resounding no.  And so I must speak up.  I must ensure that mine was a singular experience.  My words, sadness, pain, despair, must not become the experience of other autistics or people with developmental disabilities in this or any similar program.

My program is over.  But next fall, I will return to the same classroom where I spent so many long hours this year.  I will return for an afternoon to give a talk on autism, oppression, disability culture, and person-first language.

So maybe this year wasn’t filled with all the best words, but maybe next year, maybe next year I will help to define the program with the best new word of all: hope.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s