Tuesday, December 03, 2013

Kick That Door Down

Today is International Day of Persons with Disabilities. The theme is "Break Barriers, Open Doors: For an Inclusive Society and Development for All." It's a great theme, an important theme. And it's also a theme that I feel pretty pissed off about even having to write. It should frankly be obvious that my daughter and others with disabilities of all kinds deserve to be included. Just like I think it's pretty obvious that people of color, poor people, gay people, all people should be living in a society that includes them in all levels. What's hard to get here, people? Jude is a human being, and as such is worthy of being a full part of the rich fabric of existence. But here I am, with my glass of wine, and my sweet babe on my lap, typing out yet another post about why my daughter deserves to be included in life.

Perhaps part of the problem is that when we hear the world inclusion we get stuck at the school idea of inclusion. Inclusion is a word that has become linked to education (and sadly not even college education). But what happens after school? Is work in a workshop really inclusion? Adult day cares? When our children grow up, inclusion ceases to be the buzz word that it is when they were younger. In fact, it seems like the word drops off the radar just like our kids drop off the radar. But they don't just cease to exist when they hit eight-teen. They continue to live and what a life:

People with disabilities are poorer than their non disabled counterparts.
They are more likely to be sexually and/or physically assaulted.
They are more likely to be un/under employed.
They often have to fight for rights we assume are given (such as choosing where they wish to live).

 I could go on but I suspect when I post these statistics most people gloss over. I urge my readers to click the link above and read through the date. It is grim. And it's the kind of grim that I think rears it's head for so many people in our world, not just those with disabilities. We live in a world, I fear, that excels at exclusion not inclusion. I see it all over, in areas of race, ethnicity, gender, class, sexuality, and disability. And yes it is vital to look at the other areas because when I think of inclusion I think of the encompassing of all humanity. Every human regardless of their color, their ethnicity, their class, their gender (or genders), their ability, their sexuality, deserves, simply by the virtue of their humanity, to have access to adequate health care, living conditions, food, shelter, and peace. It's a big order folks but I'm tired of hand outs, of tokenism.

When I envision a world that fully includes Jude, it's pretty simple in many ways. I imagine a world that does not engage in eugenics and thus the question of choice is mote. In my imaginary world, people with Down syndrome and other intellectual disabilities are not seen with terror or sadness. The news that your fetus has Down syndrome is accepted as a variation of normal. I imagine a world in which Jude goes to school (or not as is the case in my household) like every other kid, and receives an education that meets her individual needs just as it meets the individual needs of all the other students. She is not sent to a closed room because there is no closed room. When Jude turns 18 in this world, she could choose college or not. She might choose a bohemian life, or a technical school. As she gets older, she'll fall in love, have sex, maybe get married. She would work a job that provided her with a decent income and that was meaningful. If she was sick or need medical care, she wouldn't have to worry that she would be given sub par care simply based on her intellectual disability. She would live the life that so many of us simply take for granted.

The element that I want to emphasize is that of her choice, of her options. Real inclusion means Jude gets to be a participant in decisions that effect her and her life. It means that she has the same menu that the rest of us are ordering from. Real inclusion is not a one time shot at a sport games, it's not about a few hours in a "real" classroom, it's not about working for Goodwill for .10 an hour, it's not about a pretend wedding to make up for the fact that the state she lives in might not let her marry. Inclusion means a world in which Jude gets to have a human life. Where she gets to be a child and then an adult. Where she is no one's angel (except for mine because all my beasties are pretty damn special to me), no one's inspiration simply because she exists and they feel bad for her for that existence.

What the UN proposes are working models of changes. Policies that would dramatically make life better, more inclusive for people with disabilities all over the world. The US does not hold the gold standard on how we include those with disabilities into the everyday life we live. We have a long way to go as well. By joining with our brothers and sisters (and those in between) all over the world, we have the power to effect policy, to demand radical inclusion for all people. It's time to stop pretending that the tokenism we often take for real inclusion is the real thing.

I've been told too often lately that I need to play nice. That I don't have a right to demand these things for Jude. But the thing is begging for a place at the table does us no good. We don't have to beg. We shouldn't have to beg. A place should already be set for all of us. I've never been a polite well-behaved woman, and I have no intentions of starting now. I will NOT raise any of my children, including Jude, to think that they need to ask on their knees for the rights given to the few. Instead, we will be practicing kicking down doors, and breaking those barriers. Not just for ourselves but for everyone.


Mardra - Grown Ups & Downs said...

"It means that she has the same menu that the rest of us are ordering from" great metaphor. I encourage you to keep kicking.
So many people smile and nod in the most patronizing fashion when I talk about Marcus looking for a new job (or loving his job when he had one) He does require help, from me or someone, to discover his options and find a place he can be a part of. But I'll be damned if he is dropped at the door at a place he doesn't feel welcomed and a contributor and...
look what you did. :) ANYway, I agree with your first and main point the most - WHY are we having this conversation again? What is so hard about letting humans live together? OY
so again, keep kicking. :)

Extranjera said...

THIS: "I've been told too often lately that I need to play nice. That I don't have a right to demand these things for Jude." as if wanting to have your kid accepted as a regular human being is somehow more than any parent wants? Unbelievable.

Downs Side Up said...

Yes, all of the above. It is the 'ahhh, bless' that hurts the most when I hear others talk about adults with DS. When watching Any Day Now I heard these patronising utterances all around me in the movie theatre and they are what reduced me to tears first.

Onward and upward we go.

Ginger Stickney said...

I think the infantilization of adults with Ds and other intellectual disabilities is very discouraging, and I fear that a lot of this stems from the way we portray Ds. We can't just focus on children. It hurts in bigger ways than just image. It actually hurts in terms of policy, job opportunities, etc.

And yes Extranjera, I'm tired of being told to sit down and shut up over at a demand for most basic of human rights. It's just not a debatable thing for me.

MSN said...

Nice guys finish last. You just keep on kicking.