Believe and live

I love this article by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere?

For me it all comes down to acceptance, meaningful inclusion, and equality.

None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.

We need vision.

So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout.

It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.

I don't want to only focus on the haters and the trolls, I want us to sway those who lazily vacillate, those who have good intentions, and those who just don't know any better. I want to scream our vision the loudest. To make it the all-encompassing truth, the reality, the now.

I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for reductionism for inspiration's sake because it is the lesser of two evils.

In my vision the evil trolls will be recognized as the minority they are. Those closeted sociopaths. I'm not so worried about that anonymous, faceless person who spews his or her vitriol in an online comment to an article about a person with a disability. I'm more worried about my kid's future teacher, her friend's mother, my neighbor, and that guy who packs my groceries. I worry that they won't really believe in inclusion because they haven't experienced it, that they won't see it as the most logical thing to do because no one's told them that it is.

I don't worry so much about hate as I do lazy ignorance. I don't worry so much about someone blowing off steam, than I do those minds who've never even really thought about people with Down syndrome or other disabilities as fellow human beings, because they're so used to understanding 'able is normal' as a fundamental fact, just because it gets insidiously reinforced at every turn. I worry about those who perceive people who are disabled as inspirational, marginal, apart, similar amongst themselves, and here on earth for purposes external to themselves, purposes other than living their individual lives. A perceived unity of the experience of disability concerns me.

Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.

We have an audience.

We can set targets all we want and meet them, but unless we actively work to redefine the rhetoric - the way most people view disability and especially intellectual disability, language and all - we'll always have new targets, new ways of oppression, and the fight will never end. We can't just tackle the immediate, we need to reconstruct the foundation. Sometimes that involves peering inwards too, at our own world view and thinking. It has very much meant that for me, at least.

There is a lot of discussion about being united and unified in our efforts, but how can we? We don't agree. For me there are things that simply cannot coexist if an ableist way of thinking is to be dismantled.

I can't be all "accept my kid as is, but in case you do figure out how to suck that extra chromosome right out of her very cells, please call us, we're interested." You can't say "my child deserves to be included in everything her peers are, but you know, if she gets bullied or we feel she's getting frustrated with learning math, relocate her into a nice self-contained location, for her own sake." We can never say "achievements and normalcy are arbitrary social constructs and we need to understand that, but hey, more therapies to help my struggling child the better, before she falls too far behind her peers."

I will have to constantly examine my own thinking, my own language. Will it be my child who is frustrated, unhappy, struggling, or will it be me? Am I fixing my child for the world instead of the world for my child? When did a life of achievements become the life?

We have to turn the tables.

We have to say "There is no discussion. Inclusion has to be a fact as it is a practice that benefits all. Inclusion is the natural state of things. Through inclusion everyone's experience, everyone's life will be just that much more normal (pun very much intended), and everyone will be accepted as a member of the human race and society, with whatever that entails, attempts at peaceful coexistence and conditional love."

We can't try to sell or market disability: "please accept my kid, she is not just a useless eater, she can do all of these things." Doing things isn't a precursor to humanity, being human is. We can't mystify or romanticize the chromosome and ascribe to it some specific, sometimes even supernatural-sounding traits or abilities: "Looksee here, that chromosome's special, if we eradicate it, we eradicate our pathway to the mysteries of cancer treatments or Alzheimer's." Three copies of the 21st chromosome are a part of 6 million people worldwide, and that should be enough to warrant general scientific interest. Or at least I'm going to act as if it is.

I will believe it and live it.

Disability is natural. Down syndrome is natural. It's about time everyone knew.

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Participating in the Down Wit Dat blog hop themed 'Autistic History Month' so really stretching (ignoring) the definition, but apparently 'advocacy' posts are welcome too. Maybe? This post sort of brushes on rethinking the world, which Autistic History Month is essentially about in its wish to write into history those previously ignored and rewrite the faulty parts. No? 

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?

About Grief

And how deep the Rhetoric of Ableism runs.

In my life I love. I laugh. I get angry. I get bored. I whine. I rejoice. I joke. I drink too much coffee and wine. I yell at my husband and at the computer for daring to behave differently after the latest software upgrade (the 'puter, not the husband). I dance and sing and eat burgers with gusto.

Sometimes I cry when someone's a total ass towards me and sometimes I fight back. Most times I hang out with my family and friends and just bathe in the happiness and joy.

I enjoy my life. I'm happy and content. I'm where I want and wanted to be. I enjoy my life.

Yesterday I read this article on Huffington Post about grief. It's a personal account and a parent's take on something that gets tossed around in the Down syndrome community a lot, namely 'grieving the child you thought you were going to have, to be able to enjoy the child you did get'. To me personally this exercise has always been pointless at best and incredibly insulting at worst. So I wanted to comment thusly:

"I am also a mother to a child with special needs and while I support you and understand you as a fellow parent and as a human being with a specific experience I also feel to need to bring to your attention that your experience is by no means a universal one. In fact, I often consider an experience such as yours, which is by no means invalid in any way, brought on by compliance to a rhetoric created for the mainstream, *only* for the mainstream. A rhetoric that never questions what it means to be human, what it means to have value and worth or have a valuable or a worthy life. What it means to be happy. Why we're so driven to attain a level of accomplishment, of development for our children. What is normal and how is it defined and where does the concept derive from? I know there is a whole world out there that does not define success by milestones or worth by 'closeness to normalcy'. There is love and diversity and a movement that allows for difference that doesn't define, but enhances. 

I feel we cannot change things for our loved ones (or for ourselves) unless we let go of what has been arbitrarily defined and create anew. Lets change the world for our children, not our children for the world.

Much love to you and yours."

I always feel compelled to say something when it seems like a major news outlet is picking up 'a story' I and many other advocates refer to as misery peddling, when the struggle they pick up on is not the struggle for equal rights, inclusion and acceptance, but the struggle of a caregiver to get over their shock and horror at a disability. This article in Huffington Post is by no means unique, it is the latest in a long, long line of articles discussing depression, jealousy, and even thoughts of suicide when facing one's child having a disability.

I guess misery sells. I guess overcoming something insurmountable (oh please) sells. I guess someone finally being able to love a kid who (gasp) has an intellectual disability is the stuff for inspiration and appreciation of one's own life. Who knows?

But the person who wrote the story responded:

"While I appreciate your perspective, I believe that the world you speak of and hope for is a utopia of sorts and unfortunately unrealistic in present day. Without milestones as a yardstick, parents would not know whether or not their children were falling behind in things like walking, talking, etc. Those milestones signal proper development and the lack thereof signals a need for assistance such as therapy. This is not to make these children "normal" for the sake of society, it is to allow them the opportunity to grow to reach their potential - whatever that may be. For example, if a child is not identified with a neurological or physical disability and then treated quickly enough, there is a possibility that they may not be able to walk. They would certainly have value and be considered worthy of life either way, but having the ability to walk (rather than be confined to a wheelchair or walker) would arguably bring them more opportunities and and general ease throughout their lives. I'm not sure it is fair to our children to ignore societal norms - regardless of how "arbitrary" we may think they are. Until we can change the perspective of everyone in the world, the best we can do is create realistic and hopeful expectations and a loving and supportive environment for our children and the people around them. J."

I nearly passed out.

Every once in a while there's something that just leaves me completely hopeless. Leaves me wondering why I keep doing what I'm doing when one of 'my' people - fellow parents, family members of people with disabilities, and self-advocates - with me at the barricades fighting for that better, more equal and accepting world, turns out to be fighting a completely different battle.

When they are not fighting for acceptance, but to accept.

It hurts when concepts such as 'proper development', 'treating a neurological or physical disability', being 'confined to a wheelchair' and 'societal norms' are touted as facts and something that should go unchallenged. That the only body and mind worth having and the only body and mind that will give 'opportunities' in life are the kind of body and mind that have no impairments.

The rhetoric of ableism goes unquestioned, and has become the baseline. It hurts.

My child is not a project. She's my child. I don't want to try to 'fix' her to measure up to some arbitrary yardstick or adhere to some societal norm that's really baggage in disguise. Instead of saying "How high?" I want to ask "why?"

The world is my project, even if I can't change it in my lifetime, at least I'm trying to make a difference, a change for the better for everyone in the future.

A Jerk with a Halo and Some Shabby Wings

(Should I throw in a clown nose while I'm at it? Purpose? Opposable thumbs? Scars or tattoos? Experience? A theme song like way back on Ally McBeal? Love? Some kneepads and a helmet? Resentment? Common sense? Or a winning smile?)

What are real people made of? What are stereotypes made of?

My favorite article ever written about a person with Down syndrome is titled 'People with Down syndrome can be jerks too.' To me this article and especially its title speak of great things. Although a personal story, the article offers to me a glimpse of a society that might just be able to see people with Down syndrome as individuals. As multifaceted, whole people who experience varied emotions, and whose actions are fueled by just as obscure, overt, honorable or selfish motives as yours or mine. People with agency.

Seems so simple yet it's not.

The article speaks to me of a potential for a complex inner life that is often incredulously denied people with intellectual disabilities.

Not a radical thought though, this complex inner life, thought processes, a reasoning beyond pure instincts, wants, and needs. Complex motives.

That stuff that makes you justify having a hamburger for lunch even though you'd sworn to yourself that same morning that you'd get a salad and start a new life, that makes you hate your job while you're thankful for your career, or kill a spider while carrying the ladybug safely outside. That stuff that allows you to pass that guy on the street who's waving around a sign asking for money for food without batting an eye and then pay $4 for a coffee you end up not drinking. That stuff that makes you fundraise for an animal shelter while wishing that your mother in law's driver's license will not get renewed so that she can't visit so often. That stuff that makes you hate someone you desperately love.

We can all be saints or jerks, towards ourselves and towards others, sometimes in the same moment. Sometimes we act on impulse, other times we carefully weigh our options. We make small decisions in everything we do that are guided by a complex mess of everything.

Life. We neurotypicals live it and more often than not aren't asked to explain ourselves, yet the general assumption doesn't seem to be that we acted on pure instinct, or based on some all-encompassing motivation. And even if we did, most times that specific instinct or motivation won't be seen as all we have or are, as our basic existence.

However, often, almost without anyone realizing, people with intellectual disabilities are dismissed as not having that complex mess and are flattened to a few basic emotions or motivations. People with Down syndrome are reduced to that one extra chromosome in ways that most of us never even think about. Little things. Insidious thoughts. Good intentions.

Closer to God in their innocence

The 21st is the chromosome of love

Not an evil bone in the body

Unable to tell a lie

Sweetness personified

Here to teach us what life is really about

If people with Down syndrome are not reduced to monsters as has been done in the past (hello Aristotle, you half-assed theoretician), then they're often reduced to special people, halo and angel-wings firmly attached.

Reduced nonetheless.

Subhuman or superhuman, both exist on the margins or outside of society. Only partially included or segregated and grouped together, perhaps excluded. Denied of an average, everyday, mundane existence, complex mess and all - the kind of existence many of us have and refer to as happiness. Disabled by society and its perceptions.

By a society whose rhetoric of ableism has become so ingrained into us, into our thinking, our worldview, our language, and our understanding, that even many of us advocates never pause to challenge or question it.

We don't lead in our thinking and rhetoric, we scramble to have those we advocate for lie in this bed we've made without wondering when the last time was anyone changed the sheets - and those sheets are in serious need of changing.