Thursday, July 18, 2013

The state of my advocacy. Or reflections on plants and outrage.

I think lately the premise of this blog has been to sort out what it really is that I'm shouting so loudly for here, elsewhere on the internet, and in real life, what it is that I feel the need to get out there, and what has and continues to grate me about where we are currently. I have been mulling over what it means to be an advocate, what counts as advocacy, and who is a self-advocate. What needs to and can be done and by whom.

Notions, I feel, that will mean the most for and in the future of my daughter and others with Down syndrome.

I keep reminding myself of what James L. Cherney writes in his article The Rhetoric of Ableism in Disability Studies Quarterly regarding ableism as a fundamental way of viewing the world:

"...naming and calling into question the view itself raises the possibility of altering the very strands out of which the oppressive institutions are spun. Identifying the view as problematic adds a critical dimension to the struggle by denying the simplistic perspective that sees altering a few target structures as a solution to the problem. Naming the view exposes its pervasiveness, assumptions, and implications to criticism."

This to me says it's okay to not let all flowers bloom, especially not the flesh-eating kind. Not everyone's truth needs or should be out there. That sometimes 'turning on the community' is just healthy discussion that strengthens the movement and hurt feelings are just that.

I agree with William Peace on his blog Bad Cripple when he writes:

"To get disability requires time, energy, and restructuring all of what one was taught.  Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach.  Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments)."

I'm not a people pleaser. I use alienation like a weed whacker.

I've thought about who the reader of this blog is and what they are taking away from what I write. I've struggled with whether everything is personal and up for discussion or whether there needs to be a clearer direction that might confront other directions. I've tried to zero in on what needs to be challenged and questioned and who is in the position to do that. Who it is I'm shouting at and who is shouting with me?

I am and have been angry and outraged and I've been told that I'm unappealing because I swear or say divisive things, and then I've wondered whether those aren't the best things about this blog.

They've meant I've found others who will rather make a wave than stay afloat. Waves are called for today. There is no reason for advocacy to be good-natured or diplomatic. Why should I change how I do things and occupy my space in the world just because I am the parent of a child with a disability?

I have also struggled with the surprisingly-present in the Down syndrome parent community, notions of legitimacy, seniority, involvement, and perceived authority or expertise. And then there are the recent additions of transparency of motivations and personal goals. I find the latter hard to fit into my view of advocacy.

Most times I think: "Fuck it, I'll write what I want."

Most times I write because I'm pissed off. For my kid. For her.

What do I want to achieve with my advocacy and how? What will I emphasize in raising my child with Down syndrome. How will I address advocacy in our everyday? Will I need to and should I?

I want people to halt when they see inspirational porn and dismiss it as insulting. I want people to read an article about a doctor having 'suppressed' the third 21st chromosome in a petri dish and ask themselves what the implications are and whether this isn't a problematic development. I want people to look at my kid and never ever flinch or ask me what her condition is or whether she's able to do xyz. I want my kid to be able to create for herself the life she wants to without anyone setting limitations on her because of her diagnosis. I want her to be able to succeed and fail without neither being perceived as somehow related to the chromosome. I want to not feel the need to write a blog about Down syndrome because I feel pissed off at the media, society, history, strangers, institutions, parents, or other advocates.

I used to bitch about the narrowing width of airplane seats for chrissakes. Those were the days.

And the most important question of all:

Why don't I write more specifically about Babe? She is totes adorbs after all. It would create awareness. It would show people that "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay," instead of me just saying it right there on the banner.

Because now, as an adult, I wouldn't want to read about my child self on the internet.

What's your take on advocacy? What about flowers, especially the flesh-eating kind? Should we be catching more flies with honey or is there a danger in imperfect alliances to further obscure the root cause of injustice? Want to discuss this over a bottle of wine?

What do you think?


  1. I think you are awesome and there needs to be room for everyone at the table, even the grown up table of experience, which has way too much starchy food on it! Don't ever let anyone squelch your passion for true respect.

  2. I say fuck it. Do what you want.
    Sometimes we have to get our hands dirty and risk offending others to get a point across. Sometimes we just have to point out the dicks in the world, even if they are well meaning ones.

    Much love. xox

  3. Well I suspect you know my feelings. I've always been too loud, to vocal, to aggressive. I've embraced it. Jude is awesome. The babe is awesome. All our kids are rock and roll and I will bull my way through whatever china shops I have to to make shit happen for them.

  4. Susan Ford KellerJuly 18, 2013 at 3:02 PM

    I will probably sound like a dick........

    People with disabilities need to self-advocate. Parents of people with disabilities get to advocate, too, as much as needed but fading away as the child matures. The reality is some parents will need to be life-long advocates for their child.

    Personally, I like inspirational porn featuring people with disabilities sometimes. I like it also when it's about non-disabled people or heroic dogs or wild animals who nurture another, too. So, sue me. But no one should expect inspirational porn JUST because someone has a disability.

    I have several big bones to pick:

    1) crappy special education, which is "one size fits all" in our school system.
    2) squeamish parents who avoid teaching about sex to their child. Squeamish parents who swear their adult child has not interest in sex, love, or companionship.

    So, there we are...proving once again that even in groups of people with the same interests, we can still be pretty diverse!

  5. "I am and have been angry and outraged and I've been told that I'm unappealing because I swear or say divisive things, and then I've wondered whether those aren't the best things about this blog.

    "They've meant I've found others who will rather make a wave than stay afloat. Waves are called for today. There is no reason for advocacy to be good-natured or diplomatic. Why should I change how I do things and occupy my space in the world just because I am the parent of a child with a disability?"

    This? I like this. And also this: "Fuck it. I'll write what I want."

  6. I think it's your blog and you should write whatever your truth is. I am not everyone's cup of tea on many days either. That's just me, I don't knock on doors and force people to hear me. If someone comes to your blog and doesn't like it, they can easily click the 'x' and go elsewhere. I believe that even if people see certain issues from a different angle, keeping ALL opinions out there is invaluable. There have been countless times in my life that I've read opinions/ thoughts on various topics and not agreed at first, but if I bothered to dig deeper and really reflect on it, I'd get a little looser from the cement that can occasionally grip my Taurus feet. And, even if I didn't change my thoughts on it at all, it doesn't mean I can't respect another person's right to form and express their own ideas.

  7. I think swearing and divisiveness *are* some of the best things about your blog, truth be told. Those things can't be the best things about my blog though, it isn't really me. It'd just come out contrived and not at all witty.

    I get stuck because I want to do what I want, but truth be told, I don't want everyone else to do what they want. So where does that leave me?

    <3 <3 <3 There. I'm leaving hearts on your blog. Neener neener.

  8. Well, I used to be angry about issues. And I still love feistiness. And I have been known IRL to be a big pia and stand up and speak in ways that make others uncomfortable. But I don't like judgement about others, don't have to say someone else is less or wrong for me to believe in what I like or think is best.

  9. I don't think anyone needs to fit a mold and a blog like yours can do a whole lot towards changing minds in the Down syndrome community. I do struggle with equating blogging to advocacy. I feel our society is incredibly egotistical and self focused. To me, blogging is the perfect example of this... We spend hours coming up with "our" intellectually superior take on an issue and eloquently put our thoughts down and then impatiently wait for everyone to tell us how genius we are. It is mind blowing to me the amount of time, money and energy people spend on birthday parties, chicken coops, organic gardens, decorating, homeschooling, gluten free diets and then they blog about it as if to say "Look how awesome I am". Obviously what bloggers in the community are doing is much more meaningful, but where I struggle is whether they are actually "doing" something tangible to make a real change or is this just a way to express their "genius" opinions and boost their egos in the guise of changing perceptions.

  10. Well look at your comments...much more interesting than comments on other blogs I look at, everyone telling the blogger how great they are and sending kisses. At least you stimulate a bit of conversation.
    Keep it up, feisty is good...


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