When you are as old as I am, when you've worked in the field of service to people with intellectual disabilities for over 40 years, you are sometimes struck by things. Small things. Things that pass by younger staff without notice. This happened to me yesterday.
I was getting into my car to go home. A young woman was leaving the day program from the door next to the one that I'd just exited. She was clearly in a rush. Just as she passed me, the door she'd come from opened again. A young man called to her. She turned at the mention of her name.
"I didn't have a chance tell you that I love you before you left."
She rushed back up to him, gave him a quick kiss and said, "I love you too."
And off she went, on her own to catch the city bus.
I know this couple. I was at their engagement party. And then, at that party, and now, seeing them so openly and freely loving one another, I am awestruck at the life they are living.
Because there was a time.
Not long ago.
That their relationship would have caused concerns.
There would have been meetings.
Lots of meetings.
There would have been plans.
Lots of plans.
There would have been intervention.
They would have been separated.
They would have been punished for seeing each other.
They would have been told that their love wasn't real.
They would have been told that their love was childish.
They would have been admonished for being silly.
They would have been advised to just forget each other.
They would have been told that it wasn't real, this love of theirs.
They would have been hurt by what we did and we wouldn't have cared.
We did bad things to people with disabilities who loved each other. We castrated men. We sterilized women. We wrote protocol and instituted procedures that followed policies that criminalized love. We made the human heart our enemy. We made love a behaviour. And we wrote plans to eliminate that behaviour.
Those of us who stood for the rights of people with intellectual disabilities to love were vilified, called perverts, and attacked as promoting sin and abuse.
They were hard times for those who promoted the right to love but they were desperate times for people with intellectual disabilities.
But now, he calls his love to her, she returns for a kiss.
They love openly.
They love without fear.
She must have wondered why I was sitting in the car crying as she went passed. She stopped to wave at me, concern on her face, I smiled through my tears and waved back. She grinned and turned and went on her way into the rest of her day.
Dear Dave: I remember those days of abuse and toture too. Thank heaven they have mostly ended. You paint this picture so eloquently. Colleen
"We made love a behaviour."
Gah. A stunning piece of shameful truth. And this, too: "We made plans to eliminate that behaviour."
Who do we think we are?
What a powerful post, Dave. I like the happy tears at the end...and her grin.
As always, beautiful stuff here. (Imfunnytoo)
Wow. Powerful and beautiful.
I'm glad those folks are there and can experience that freedom. It's not yet like that everywhere, but it's gotten so much better.
I worry about the tides of time though. It seems progress waxes and wanes (though never wanes as far as its starting point). The tight lipped true believers who'll 'lovingly' help the freedom right out of someone's life in their (self)righteous charity still lurk out there.
Sometimes it's a battle fought one person at a time.
Those tears were good ones though - and well earned. =)
Sadly, there are still many cases around the world in which women with disabilities are forced into sterilization, often against their consent or will, sometimes without even informing them (they are informed they are having some unrelated medical procedure for something else--if they are "informed" anything at all). This especially happens among women with either intellectual or psychosocial disabilities who are still locked up in institutions. One common "reason" I have heard for sterilizing women with disabilities is that it prevents pregnancies that could otherwise result from being raped by staff or others in institutions. In some institutions, sterilization is viewed as the "solution" to rape--not stopping the ongoing pattern of rapes and assault from staff, but simply preventing pregnancy.
People wanting to learn more can google individual cases like Ashley X, or check out some of the papers produced in Australia (though it is NOT unique to Australia, Ashley X is in the US. Australia is not unique in having the problem, they're only unique in having documented it in a more systematic manner than most countries): http://wwda.org.au/issues/sterilise/sterilise2011/
I should note that women of color, especially indigenous women, and particularly women who are poor are also often targeted for non-consensual sterilization and/or abortions--even if they are not disabled. If a woman is a woman of color AND a woman with disabilities AND poor, this can significantly increase her risk of being pressured or forced into sterilization or abortion.
I loved your post.
Happy tears...and sad ones. Beautiful, as usual.
Oh, how wonderful for them to have each other. Love is splendid. :)
BTW, the theme of separating people and preventing them from getting emotionally close to each other happens in psychiatric wards too. At the end of 2013 I ended up in a psych day program. One of the first things we were told was a rule that we weren't allowed to make friends with each other. How on earth is that supposed to help people who are already lonely and isolated? I left the program after 4 days because the extent of control and coercion was making me feel even worse than the depression/anxiety that had landed me in the hospital in the first place.
I read this a few days ago and it's stayed with me. It's a small thing but I feel like sharing. My child who is 18 months old has Down syndrome. He's not really mobile yet so I carry him with me while I go about chores so he can see everything. I feel tearful when he watches me open the cupboard, choose the herbal teabag, put it in the cup, pour the water. I remember all those 'making tea' programmes that people were 'put on' in the 90's... really very recently. I hated the programmes at the time, I hate that the consequences of privation of opportunity were framed as goals for the victims. I hate that people who had lived all their life at the bottom of the pile in an insane community were thrust into so-called 'independence', regardless of how they felt about that. I hate that making a cup of tea was cast as a uniform marker of wellbeing. I hate that people who liked tea needed to be introduced and coerced into meeting the means to make tea. My little one observes my tea making with mild curiosity like it's not a big deal. Making a cup of tea should never have been a big deal. But it was, and it still is, because it happened and we remember. International Day of Mourning and Memory is coming around again in a few weeks, a day to hold the grief that is there all the time.
I just discovered your blog today in my desperate search for real support for a particular individual to live his "best life". I am feeling like it is all such a crock right now... the USA DBHDS has all these great speeches but then our providers are sweating in fear over liability and no policy has been forged to address the actual mechanism and supports. You made me cry, but you gave me hope too. I will make yet another phone call, and write yet another letter and I will keep asking questions. Thank you.
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