Category: Blacktelephone Sites

Pressed for Time

This will have to be the short version without too many researched links because I only have a limited amount of time in which to write this post. Those of you who are caregivers for people with severe disabilities will probably appreciate this fact of life. Or maybe this is the modern human condition in general.

Adaptive Physical Education

In the #USA we have some laws: Education of all Handicapped Children Act of 1975, Americans with Disabilities Act, and the Individuals with Disabilities Education Act that essentially means that students with disabilities can join in all the reindeer games. You see, at least in the classic video Siobhan likes so much, Rudolph has a disability. His nose glows. Anyway, Siobhan was eligible for lots of services and Adaptive Physical Education (APE) was one of them. Again, pressed for time, I won’t go into all the less than effective methods of providing APE for kids who need it. Next time you’re among a crowd of severely disabled people notice how many seem fit and trim to you. I rest my case.

Swimming Achieved

One of Siobhan’s early APE teachers said that he would like to teach her to swim and he did so. Just like that. She was in school in Malibu at that time. We’re in the Santa Monica/Malibu Unified School District, just to explain how she came to attend a Malibu school. She had a long bus ride to and from the school and other aspects of it were very bad for Siobhan but Gary, the APE guy really did begin the process of teaching Siobhan to swim. This was nothing short of a miracle as far as I was concerned. Thank you Gary.

Pool Access

The next year Siobhan did not go back to Malibu, She came back into Santa Monica where it was easy to drive her to school. And we wanted her to continue her swim program which was the only part of APE that she was benefiting from. She can’t run, and she can’t jump, and she can’t kick a ball easily, but she can swim. There are some details I’m going to get wrong since I’m writing this quickly, but what I remember about this stage of events is that the school principal wanted to keep Siobhan out of the pool. If she had a bathroom accident in the pool they said they’d have to drain the pool and charge us for cleaning and replacing the water. This probably sounds familiar to other people who have been banned from facilities use because of the color of their skin, or their religion, or any number of other things. In any event, we persevered and got pool access, and Siobhan never had a bathroom accident and by the way Olympic swimmers pee in the pool all the time.

Lifelong Skill

Nobody expected that Siobhan would go on to win Special Olympics gold medals because they see her disabilities and dismiss her. This is the essence of disablism. We have had to fight for pool access ever after that, including in the present, now that she’s out of the school system, but Siobhan continues to swim four or five times a week. And she’s trim and fit. And it was all worth it. Just this week she had a tough time with two other swimmers in her lane at a public pool but she persevered. As Dory in “Finding Nemo” says: Just keep swimming, swimming, swimming, swimming, just keep swimming…

Tragic Shooting

Before midnight this New Year’s Eve, 2013, I posted a Tweet on my @AccessibleJoe account: “Want me to tell a sad and spooky New Year’s Eve story?” The writing is disjointed because I’m copying Tweets. This is the story I told:

In 2006 there was a tragic shooting at the park a half a block from our house. One young man, Miguel Martin, was killed. As so often happens, a shrine was built on the spot with candles and balloons. The memorial persisted. People came to stand in small groups and light more candles. That New Year’s Eve there was a light fog. The air was heavy. Fog horns were blowing on the pier. Tonight we rang in the New Year by banging pots and lids on the front porch. Others were also making noise, setting off fireworks. The New Year’s Eve of 2006 our street was silent when we opened the door just before midnight.

Remember, there was a light fog. Just before midnight New Year’s Eve 2006, light fog, heavy air, silent street, we were ready to bang our pots and pans when we saw it. Coming down the street, indistinct in the fog, in the dead center of the street, the first thing I noticed was a floating ribbon. Looking up I saw a Mylar balloon with a long bit of ribbon tied to it. The ribbon end was just off the ground. That night there was no traffic. No cars were moving. Now, even at 1 am, there are two or three cars a minute. The balloon tied to the ribbon was floating our way very slowly in the dead center of the street.

We were astonished.

Psychopomp

The first thing I thought of was psychopomp: Greek mythology, a guide of souls to the place of the dead. We just stood there, rooted to the spot, in the silent street, watching the balloon make it’s way toward us very slowly, in perfect balance. I began to talk to the balloon. Go back, I said. For we had made the connection between the memorial for the young man and this balloon with a black ribbon. It seemed to hesitate, then it was apparent that it was still moving very slowly ahead.

We watched the balloon for a while, discussing what we should do. It was a symbol of disconnection, of searching. As a symbol of the spirit of the young man who was killed it was haunting to see this. I did not want to stop it. We watched until the balloon was past our house. We didn’t interfere. A symbol like that does not appear every day. Why stop it? The next morning I went out to find the balloon moored to our next door neighbor’s hedge.

Life Is Uncertain

I freed it and took it in hand. I said: you have to go back. Then I walked it up to the park, to the memorial, and anchored it well. I stood there for a while, looking at the unlit candles and the sagging balloons and the ragged stuffed animals. We sometimes talk about the floating balloon appearing like an apparition out of the fog. I think of it from time to time.

I think of the young man who was gunned down by gangsters at a park where Siobhan goes all the time and realize I can’t save her. I won’t always be here for her, but while I am I’ll do my best to shelter her, to protect her. That’s all a dad can do.