TASH Convention in SF
Pam Wilson
If your news program covered the TASH march in San Francisco today, you might
have seen Evan carrying a sign saying:
"Medicaid Cuts threaten my life. SSI cuts threaten my future. Changes in IDEA
close the door to educational opportunities. So I march." He drew a picture
of the whole family underneath the words. The other side of the sign said,
"I am marching for my life," with a picture of the sun he drew.
Our news program decided to show a smaller demonstration about the
confederate flag that happened somewhere in the south.
If you think it would make a difference, you could make a sign with your
children and send pictures of them with it to your local newspapers and TV
newsrooms. Maybe next year they would carry news of disability activists.
It was a heavy load for one boy to carry, representing so many children who
have so much to lose. He marched along with role models and heroes all
children should know. I wonder how many grown-ups would recognize their
names. I learned many more than I knew in the three days I was at the TASH
convention.
It was incredible. There were people there who changed the world for our
family. I couldn't believe I was in the same room with them; I wouldn't have
been more impressed by the people who wrote and signed the Declaration of
Independence or the US Constitution. A couple of times I was near enough to
tell them how much I appreciate and admire them, but I'd get too choked up
thinking about how the world would have been for us if they hadn't changed
it.
At one event, Evan asked Bob Williams if he could pet his dog. I took a
picture when Evan asked, to put in a history book I decided to make for him.
I was thinking that when he is a man, I will bring out this book again and
tell him about the owner of that dog being so kind to him.
Tonight his dad took us out for dinner, and Evan said, "Oh! Good news!"
When his dad asked, "What's the good news?" (which he has to say so Evan can
tell whatever story he has in mind), Evan told him about the wonderful dog
that he met at the TASH birthday party, and sat next to when he was drawing
his sun picture. Then he said, "Dog is from Bob Williams. He gave a good
talk. We march."
After the march there were more speakers, and Evan wanted to stay and hear
them all. We were almost late for our plane home (I had changed our
reservations because I wanted Evan to see the beginning of the march). He
saved his sign to show his dad. (He drew the sun for him, and labeled it,
"son," saying it was like "soon" because he would see his dad right after the
plane ride.) It was probably a sight to see us running through the airport
with Evan in a wheelchair carrying his sign so proudly.
This weekend I realized that 12 years old means he is a young man as well as
a big boy. He has his own opinions and experience, and faith in his own
convictions. I wish I had not given up so much of my vision of him as a grown
man when he was a newly diagnosed baby.
Next year, the TASH convention will be held in New Orleans. The year after
that, it's Seattle.
We met wonderful people in San Francisco, and I gathered up a ton of
information and resources. I haven't even checked my email yet and missed my
daily reading of the list very much. The flood waters in our local river are
receding but the river is high and very powerful. I haven't checked my
basement (well of course, email comes first).
Our river is one of the last to reach flood stage during storms like these. I
really feel for people whose homes are near other rivers in Western
Washington. The flood damage happens as quick and devastating from rain as
from DC.
Evan is hoping the temperature will drop a little bit so he can have some
snow. Yikes.
pmwi...@aol.com, bb...@scn.org
TASH
29 W. Susquehanna Avenue, Suite 210
Baltimore MD 21204
Phone: 410-828-8274
FAX: 410-828-6706
TDD: 410-828-1306
1-800-463-5685
FAX 905-686-6895
email: TA...@tash.org
Nancy Weiss, executive director
Hans C. & Nancy Abplanalp
Thank you for sharing. I wish I could have seen Evan in the march. Why was
he using a wheelchair? I hope he was just tired.
I have noticed that when I talk to parents whose children with ds are
adults, that they really appreciate the gains that our children are making.
With some, you can almost see them thinking, "Yes, it was all worth it.",
when you share stories of your child's accomplishments. You're right. We
owe them a tremendous debt.
I hope you got to hear my good friend, Bonnie Mintun speak. How about Tom
Neary? Two incredible, pro-active believers in full inclusion. I don't know
if they were doing a workshop, but I wouldn't be surprised.
Cheers,
Nancy
hcabp...@ucdavis.edu
Pam Wilson
adults, that they really appreciate the gains that our children are making.
you share stories of your child's accomplishments>>>
What really touched me was that this conviction was discussed by self
advocates at the TASH convention; people with disabilities who refer often to
the children growing up in a world where we must all keep building
connections and safe places for them to grow. They are advocates for all
children, moreso than any leaders I have ever met.
Their regard for children born with disabling conditions is deep and fierce.
They are working hard with politicians and bureaucrats to save their lives
and protect their futures. It makes what we do as parents seem like a hobby.
Of course, they have a better idea of how much our children have to lose.
Listening to their speeches seems to have had a great effect on Evan. He has
been carrying himself with such self-assurance since we have been home, it's
as if he matured five years in three days.
<<<I wish I could have seen Evan in the march. Why was he using a wheelchair?
I hope he was just tired>>>
We have found that airplane travel plays havoc with Evan's diabetes, so we
use wheelchairs in airports as often as possible. He loves to travel so we
watch him very closely, hoping he will enjoy every minute. I know he was
tired on the trip home, because he kept the wheelchair in Seattle all the way
to the car.
He did stand with his dad at the luggage carousel to spot our suitcases but
that was almost too much for him. He has made it to only three Tae Kwon Do
classes since his adventures with bronchitis followed by the three weeks of
the diabetes roller coaster so he isn't back to his full strength yet.
I will look through the materials I picked up at the TASH convention and let
you know if your heroes spoke or led sessions. At any moment it seemed there
were dozens of workshops going on. They also had a childcare center called
Club TASH that Evan enjoyed immensely. Tonight he told his dad that when he
goes on his next business trip, he should stay at the Hilton. ;-)
Hmmmmmmmmmm.