I believe that it's best to just tell the truth. I told the audience yesterday that I'd contracted a virus and was low energy for the presentation. I worked harder than I admit to keeping myself up and going for the day. The audience was kind and understood when I needed to quit 20 minutes shy of the scheduled time. (Although on a Friday, it didn't seem like much of a hardship to most.)
The day was full of conversations and a number of Rolling Around Readers came for a quick hello. It's great to meet those who read the blog - it keeps motivation up. I saw some old friends and caught up with them on how things are going. There were several self advocates there and I was thrilled that several had things to say during the day. One woman got up when I'd been asked a question about 'rights versus responsiblity and where does the need to instruct fit in there'. These are difficult questions, particularly given that I think many agencies are using the rubric of 'rights' as an excuse for what otherwise would legally be called 'neglect'.
Her question, intuitively, settled the debate. As always self advocates are much more reasoned than ever given credit for, much more subtle in their understanding than any IQ measure will ever capture. She got me out of a tough situation, rah her. There were several other self advocates there too. Two got up on stage to have their picture taken with me, they are going to email one to me so I can post it on the blog.
Anyways, this post isn't about the lecture, the kindness of the audience or the insight of self advocates. It's about what happened afterward. Joe and I were the last to leave as we (that would be Joe) had go pack all the stuff up in the car, gather all the evaluations sheets, ensure that nothing was left behind by us ore anyone else. I waited patiently while this was done.
When we arrived in the morning we were met by an elderly Italian gentleman who was strolling around the beautiful quadrangle. It was funny that, even though his gait was unsteady himself, he wanted to attempt to push me up a slight incline and into the building. He gave up with ready humour that wasn't cruel - quite a feat. He was there again as I was coming out of the building.
He waved at me, not in greeting but to stop, slow down. I did as bidden and he came over to me. He told me that he'd come by during the day and he'd sat out in the coffee area and listened to me talk. Joe had mentioned to me that the lecture was piped into that area, so I nodded. He said something kind about my story - telling. 'There were two girls here, they had ...' he struggled to remember what it was called. The two self advocates who'd had their picture taken with me both had Down Syndrome and both were vivacious and noticable, so I guessed, 'Down Syndrome?' He nodded 'Yes'.
He took a big handkerchief out of his pocked and mopped at suddenly watery eyes. 'I watched them, in there, and it really got to me. Seeing them here." Now he can't talk. I had all sorts of things rolling around in my head but he went somewhere different, 'That's what we went to war for you know. To stop that man from killing girls like that. To stop him from killing all sorts of people, but especially girls like that. Seeing them here today, it made me think of the men who died, that maybe it was all worth it.' He was completely choked up ... 'I'm sorry' he said, 'I've been thinking about the war a lot these days. I don't know why. Most days I wonder if it mattered that all those boys were lost. But then today ...' He mopped his eyes again and simply waved goodbye.
7 comments:
So often, when one does "the right thing," we never know if it really matters - if our actions really make a difference. Like the story of the starfish on the beach being thrown back into the ocean: "To that one fish, it makes a difference."
I'm glad your listener was able to realize what a big difference their willingness to go to war (with the loss of so many young lives) made. I hope he finds comfort in that realization.
Thanks for sharing, Dave.
Yes, along with my people, gay people and folks with disabilities were marked for extinction.
I remember watching "Saving Private Ryan" with my young teenage son. We saw the soldiers hit the beach at Normandy and were cut down.
He asked why they went. I remember telling him that those young men were a few years older than he was. They knew what awaited them on the beach... but they went anyway. They knew it was necessary.
Not all wars are fought on the beach. Not all wars are necessary.
However, many are necessary and costly.
somehow that elderly man's realisation has touched me. Yeah we can argue the other reasons for the second world war but for this man it was to allow people with disabilities to live. Wow.
I wish that I could have met the elderly man, too. What a beautiful soul.
Odd to read that today after reading this.
A child is born and someone--whether the parents or the state--must care for him or her, as in the case of the 2 year old daughter of Deborah and Ariel Levy, who was born with Down's Syndrome after a botched genetic test.
So, in our litigious society, these parents have chosen to do what seems probably like the only real option--to seek damages from medical center that performed the testing to the tune of $14 million dollars to "cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter". The lawsuit seeks additional monies to cover her life-long care needs as well as for both parents' depression and emotional stress.
...
But undoubtedly, they have been forced into a situation by a medical mistake that never should have happened....
The test being botched didn't cause the child to have Down syndrome. It tricked the parents into letting her live, though, which they evidently resent two years later. Did we win the war, really?
This one made me cry. Thanks Dave, for reporting it all - the good, the bad, the ugly, the sublime, and, quite a bit lately, the farty.
What a beautiful story and a beautiful man.
I only discovered your blog this morning and have already been in tears more times than I can count on one hand. It amazes me how well you can verbalise the things that are so clear in my mind but turn to mush when I try to explain them to others.
I'm just beside myself at the prospect of hearing you speak at World Congress in 3 weeks. I'm travelling from Australia and will be the super excited girl at all of your presentations hahah
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