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?

Why I do what we do and then some.

Now that I've written about the Spreading the Word to End the Word, as in ending the use of the r-word (retard and retarded), all of the different angles I could have approached it from keep swirling in my mind.

I chose to make it personal. About my kid, about Babe. because it very much is personal. It is about you hurting my kid and my family when you say it.

I decided to take my words and punch with them. I threatened.

Why did I choose that approach?

While I was driving yesterday a radio commercial came on, part of a campaign targeting drunk driving. The message was that it is more expensive to drive drunk if you get caught than if you just take a taxi. This approach does not and never has appealed to me. I'm the person who talks back to the radio and says "Forget about money, what if you kill someone by accident, what if you hurt someone? Ever think about that?" or something like that, usually probably peppered with some 'fuck' and 'fucking' in there too. Because that is the approach that appeals to me. Not just the swearing though, the caring about others and about not hurting people.

I'm not overly shaken by the thought of a huge fine. It's only money.

I'm not overly shaken by the thought that I will get hurt myself if it's the direct consequence of my own bad choice. I'm an adult, I make my own choices, I live (or not) with the consequences. I usually instinctively try to stay alive and thus don't normally even contemplate driving drunk.

I am, however, very shaken by the thought of hurting someone who I don't know, whose only mistake is not taking into account that a complete stranger can't be bothered to think things through and put themselves in other people's shoes and consider how their bad choice could affect an innocent bystander.

This is not the first time I've heard the financial loss approach to drunk driving so there must an audience out there for it. I get it. It must hit home with some people. Good for them for not driving drunk, even if they're not worried about killing their neighbor, but having to work overtime because of a monstrous fine. Whatever works.

Whatever works? Really?

This has made me think of this whole blogging thing I'm doing here, and the way that I'm doing it. About writing about Down syndrome as a point of advocating for people with Down syndrome, or with other intellectual or developmental disabilities. Blogging to make a point instead of processing something, or recording something, or even rejoicing in something. I have moved on from awareness. Awareness is no longer doing it for me, or for Babe.

We need more. We need it all.

I don't just blog for awareness, I blog for complete acceptance and for real, meaningful inclusion of people with Down syndrome in our society. I blog to level the playing field. I blog about Down syndrome to change perceptions, to find others who think alike so that together we can be stronger, to make the world better for Babe and for everyone with Down syndrome. I take my kid to the park so that she can enjoy the fun that is gazillion screaming toddlers and I blog about Down syndrome so that she can be in an inclusive setting in a classroom once she goes to school and not be marginalized as 'too different from the rest of us'.

I don't want to journal and I don't want to show you what our life is really like. I want to change you for the better or if you've already arrived I want to be your friend.

I want a life for my kid that is in no way made harder by false impressions of Down syndrome and people with Down syndrome.

This is where I'm at, and where I fit in. In a revolution.

I want you to love like I love. Just love.