they

~

On Sunday morning, Congressman Todd Akin (R-MO) told a reporter from KTVI the following:

“It seems to be, first of all, from what I understand from doctors, [pregnancy from rape is] really rare. If it’s a legitimate rape, the female body has ways to try to shut the whole thing down.”

Congressman Akin sits on the House Science Committee. The SCIENCE committee. And apparently, he thinks that women’s bodies have a magical power to avert conception during rape. As long as it’s legitimate rape.

His comments are so outrageous as to be comical. Unfortunately, the joke is on us. Because he is intimately involved in deciding what is or is not legal to do with OUR bodies.

There has, of course, been a firestorm following the ill-fated interview. Anyone who needs a vote has come out to condemn Akin. And every talking head from here to Timbuktu has had something to say about it.

The question that I’ve heard repeated most often in the past thirty-six hours has been, “How will this affect the women’s vote in the Missouri Senate election?” And all I can think is, “Reeeeeeeeally? That’s the question we should be asking?”

I am horrified by this whole situation. We are all entitled to our beliefs about abortion. It’s a tough, tough issue and not one that I have any interest in debating here. But holy crap. How is it possible that the people who would decide our fate – who would make laws about our bodies and how we care for them, what our insurance can and can’t cover and who would set priorities for massive amounts of research dollars and healthcare subsides – have so little understanding of who we are?

Legitimate rape? The man said, ‘legitimate rape.’

This scared me. It really, truly scared me.

Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”

And that was when it hit me.

Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.

We had gotten into some of the nitty-gritty. I was explaining why a particular term was problematic and I said that I’d heard self-advocates condemn its use. She asked what they would prefer that we use. She really wanted to know how to better frame it. In context, the question came out, “So what do they want?”

It took me four days to answer the question. I finally wrote the following.

The other day, you asked me what they (self-advocates) want. I don’t know if you caught it – but I was somewhat stymied by the question. And it’s bothered me ever since. I wondered if I couldn’t answer it because perhaps I just didn’t have the handle on this that I thought I did.

But then I had a revelation.

I can’t answer the question because I’m not the one of whom it should be asked. They are.

What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.

What they want is to not be the “they” in this conversation but the US.

That’s the answer to your question.

xo

J

I am grateful that Liz has begun the process of reaching out to self-advocates. I am hopeful that through her conversations, the gap can be bridged, changes will be made and that when Autism Speaks it will be autistic voices that we hear.
.
Because after yesterday – watching a group of men in sharp suits argue in the public forum about what MY body can and can’t do and what I should or should not do with it, while it’s still not the same, I get it more than ever.

;

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26 thoughts on “they

  1. There were so many horrifying aspects to Akin’s comments. I found the blithe ignorance of basic biology just as threatening as the casual reference to “legitimate rape.” As if the term “rape” needs a modifier. And then the follow-up stories detailing that Akin is far from the first to make exactly these sorts of crazy assertions, and that he has co-sponsored legislation with Paul Ryan concerning abortion and “forcible rape.”

    But back to autism. (Although I’d note that the lesson taught here at _Diary_, over and over, is that not a single one of us can afford not to be involved in making the communities we want to live in.) I’ve learned so much from reading this blog and from reading autistic bloggers, and it makes me more and more self-conscious about how much I know and don’t know about what my son wants and what he doesn’t. I’m his parent–and I love him beyond description. He is my sunshine. I can’t do anything *except* advocate for him as best I can. But when I move beyond his needs, as I understand them, and into the wider world of autism advocacy, I find myself asking more questions and making fewer assumptions.

    Thanks, as always, for tackling the Big Issues.

    Karin

  2. Excellent, thought-provoking post. As parents, we advocate — but unless we are “them” we do not know what it means to be “them.” You have found an excellent way to put this into perspective (as usual!)

  3. The whole thing. . . . . the whole thing. .. what science classes did he attend, and which ones does he want to FUND? OMG!!!! What medical professionals back him up? I attended the wrong science classes during high school and college – because none of them back up his science. I hope the people of Missouri speak with their votes.

  4. We forget this important distinction. I think most of the time we know, we know our child and we know what they need, but in truth we’ve just been getting lucky. I keep reminding myself to ask my children, “what do you want me to do?” when I feel the need to step in for them. I am in the middle of dealing with harassment and prejudice from a teacher. I fired off an email to the entire chain of command at the local school system and I think my response in that moment was more than what my son wanted. He just wanted out of the class. That is being arranged. But I do not regret my email. The system as a whole needs to deal with the issue of diploma requirements and the support structure so that kids with autism, who are more than capable of handling the material, do not have to deal with teachers who refuse to teach them.

    Anyway, I want my son to advocate for himself and I’m working on doing what he wants.

  5. Thank you, on behalf of my son who is not able to voice his concerns …yet. But he will, oh he will, thanks to those who blazed the trail before him – Kasianne, Laura, Lindsey, Lydia, Lynne, Carly, ThAutcast, So many more voices making themselves heard, demanding to be heard. I am grateful for their courage an strength.

  6. Exactly!! I cannot wait to hear what self-advocates want…I crave their insight and input, honestly. I look forward to a day when my own son can tell me what he wants and how he feels about all of “this”. Until then, I will simply advocate for him…but I cannot speak for him.

  7. Amen!

    I don’t like hearing the “autism is a tragedy” Autism Speaks ads. They depress me. My life – a whole other issue that has nothing to do with my Aspieness – might be a comic tragedy, but I’m not a tragedy. I don’t need pity, I need understanding and acceptance. I might have enough issues to become a magazine, but I am also more than a ststistic. While I’d be willing to give them a second chance, Autism Speaks leaves a bitter taste in my mouth (as do Senators, especially with ones who are obviously making their mothers weep).

  8. Wow. When I read that quote I, not being from the US and not having heard it yet, thought “holy crap”. These are the people that make all sorts of funding decisions to govern one of the most influential countries on the planet. Setting priorities for the environment, the people, both well and in need. Wow.

    But thank you for making the insightful connection… Hard to focus on that “legitimate” part of your blog today! Amen sister.

  9. If Autism Speaks is truly interested in including the voices of autistic adults, Karla Fischer of Karla’s ASD page stands ready to help. “I have approached Autism Speaks before about working with them to bridge but got nothing. I am putting it out there again.

    I am a senior PM at the largest chip manufacturer in the world with as much business experience as many of their own board members. I am capable of understanding advocacy input to business needs. I think I can bring more money in to their organization by shifting their tactics and simultaneously serving the autistic population instead of hurting us. If they are interested in hearing my views on how we can make this mess we are in a WIN/WIN I will gladly work with their executive board members and senior managers in this capacity. They can reach me here. If anyone knows a solid contact at the company please direct them to me.”
    Karla requested that people help her with this step, so here you go. Please feel free to contact Karla.

  10. Wow I hadn’t heard about him saying that I must have missed to many news programs with my son having his tonsils out. I can’t believe that anybody would think that a woman’s body can prevent her from conceiving if that were true we wouldn’t need birth control.
    My David is 7 and just starting to speak up for himself against other kids, but someday he’ll be one of the ones out there advocating. Until then we have to keep speaking on his behalf seeking what is best for all of our kids.

  11. Thanks Jess – you got it exactly right. I’m in my 9th year of volunteering with Autism Speaks, and sent this e-mail to Liz Feld at the beginning of August: http://grasp.org/profiles/blogs/great-letter-from-an-autism-speaks-walk-volunteer-to-autism-speak?xg_source=activity. I have not received a response, which is disappointing. Therefore, I’m glad to see that Liz is having this conversation with someone. We NEED to include self-advocates; “It’s time to listen” is a tag line that does not work until we actually do so.

  12. Jess, I know you don’t work with or for Autism Speaks, but just passing on the info is wonderful. Thank you. Sometimes there are just too many steps to figure out, and sometimes an introduction is extremely helpful. I appreciate all that you do. Your Brooke is much like my Kayli.

  13. I don’t mean to stir up ANY controversy at all here but the conversation about what is needed should definitely include autistic people but non-autistic people absolutely have a say also. Parents should have a say. Siblings should have a say. Teachers should have a say. If we left it up to autistics only, the services/research etc that would be provided/budgeted for would likely better service those who are in a position to advocate for themselves. That leaves out a whole bunch (maybe the mahority – I don’t know) of others who need people like their loved ones and care givers to speak for them. I think there needs to be a broad spectrum of representation and that certainly can’t be fully represented by autistic people alone. But yes, they should absolutely be a part of the discussion.

    • Jay Train,

      Thank you for sharing your thoughts.

      I’d like to address this part of your comment:

      ” If we left it up to autistics only, the services/research etc that would be provided/budgeted for would likely better service those who are in a position to advocate for themselves.”

      I believe that we are selling autistic self-advocates severely short if we assert that they are only capable of advocating for the needs of folks with an identical profile to their own.

      Even if so-called higher functioning autistics were the only ones advocating on behalf of the autistic community (which they’re not, but even if they were), why would they be any less capable of advocating for their more severely impacted peers than Neurotypicals are? I think that’s an erroneous and dangerous assumption that really serves to institutionalize the further marginalization of autistic voices.

      I do absolutely believe that we have to work together. I think that teachers need to speak up about the resources that they need in the classroom and doctors need to speak up about what resources they need to better recognize and appropriately care for this population. And I certainly believe that parents need to speak up on behalf of children who do not yet – and some who may not ever – have the ability to advocate for themselves, but in order to figure out what exactly we’re all advocating FOR, we have to value the perspective of and seek to learn from those who are actually living with autism.

      Again, thank you for sharing your thoughts.

      xo

      J

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