I was chatting, electronically, with someone who told me about her child with Down Syndrome being in a restaurant with friends. The waitress serving the group was moved to tears when hearing them all talking about marriage and plans for the future. As it turned out the waitress, at one time, worked with people who have disabilities.
I understand her tears.
For a long time we have worked for, hoped for, and dreamed of a day when people with Down Syndrome, people with all disabilities in fact, would grow into a world of expectation of adulthood. This was once thought impossible and now it seems at hand.
And many of us are unsure of how to respond, how to react.
This generation of children with disabilities are the first to take a step towards the new world of adulthood. Generations past grew up in the land of the long corridor, in the region of hopelessness and in the territory of outcast. We have no idea of how to make our way and what complications may arise. We are unfamiliar with the joys that are coming. We don't know, sometimes, if we should laugh or cry or simply sit and marvel.
I see these kids when I travel.
I speak with them.
They use words that are unique when spoken with thier young voices - rights, choice, MINE.
Once the future of someone with a disability was mapped out in meetings ... goals were set, targets established, success was made measurable! We planned and we plotted and we prepared. We knew what was best and we wrote it down ... in ink ... because we were so sure of ourselves and our right to draw maps and plan plans.
That waitress knew.
Deep down she knew.
That those voices that spoke of the future, of adulthood, of expectations, were free.
Free from the control of others.
Free from the input of strangers.
Free from the plans of the team.
And I think, perhaps, that's why she cried.
I know it's why I do.
We were talking in our self advocacy group about the cost of the still open state institutions and the 30-something president of the group asked what they were! I felt happy that he didn't know. Think of a future without those places. CA still has 1500 people institutionalized.
ReplyDeleteThere are still millions of people around the world who are institutionalized--the organization, Disability Rights International, documents the abuses that are too common inside them and has a global campaign to end all institutionalization of children with disabilities--check them out at http://www.disabilityrightsintl.org/ Their videos and reports are heart breaking.
ReplyDeleteWe have managed to free millions, and this is undeniably great. Millions left are waiting for us to finish the job.
I think that's exactly what she was feeling. We're moving people out of institutions in Illinois. We have completed one and are on the second. I'm not sure what comes after those. We work really hard to prepare our kids for life in the "real world" - we sure hope they will have a shot to live in it -
ReplyDeleteI see it and hear this all the time in my life now. I left a fairly high paying and respectable position in a "smaller/more improved modern institutional setting" so I could be on the other side of of the aisle of inclusion. True inclusion can only occur when congregate care settings eliminated or radically altered to fit the desires and needs of those in them, I suppose.... "You may say I am a dreamer....I am not the only one" ...Hope this waitress got a big tip!!
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