Opening My Mail

I had been requested by a woman with Down Syndrome that I had come into acquaintance with to attend a meeting with her father and her sister. Her mother had passed away a few years earlier and the passage through grief had brought them all closer together. There was resistance to my being there, but she was a strong self advocate and stood her ground. Besides herself there would be her family, a social worker from her agency, and me.

The topic?

Love.

Or more accurately, love with the possibility of sex.

As a young woman she was romantic. She dreamed of a boyfriend, of a wedding and of a life beyond that with the man she loved. These dreams were tolerated, not supported, until she met a man. She was in love. That's where I came in, she knew that I had worked for many years in sexuality and that I believe that people with disabilities have a right to a full adult rights.

When I was introduced to her dad, all he said was, "I googled you."

Immediately I wondered what he had found, I hadn't done that for a little while. But he would find what he would I'm not ashamed of my body of work.

The meeting went as anticipated, except for the fact that I had nothing to say. She had invited me to help speak the case for love, but she was doing that just find on her own. She knew what she wanted and she knew she loved her boyfriend and she was determined that this relationship would grow.

Father and sister were equally adamant that the relationship be stopped 'before more harm was done.' She clearly couldn't handle an adult relationship and didn't understand the full implications of love.

It all ended with her bursting from the room in tears. 'You talk, talk, talk, but you never listen, listen, listen,'

It was now that they all looked at me and asked me for a professional opinion. I said that the woman who had been at the meeting, the woman who had plead her case, was articulate and clear about what she wanted. She wanted love from her boyfriend and she wanted the relationship to be supported and celebrated by her family. In no way did I notice a deficit in her ability to be family.

I asked the dad one question, "Wasn't your daughter born with a hole in her heart?"

"Yes," he said, thrown by the change in topic,, "but she had that fixed."

"Oh," I said.

"What do you mean 'Oh'?" he was annoyed.

"Well, I'm wondering why you want to put another hole in her heart? It seems like you are upset because it's working properly."

I was asked to leave.

Yesterday's mail brought me an invitation to her wedding.

Grey Matter

Several of the hotels that we stayed in over the last few days on the road to and from St. Louis had renovated or 'updated'. They all looked great, but looks can be very deceiving. In the first one I got off the elevator to turn towards the room and sank into porridge soft carpet. I'll bet it felt good to walk on if you were fully able to balance. But the wheelchair protested every inch. My shoulders were screaming by that time I got to the hotel room. The first time, Joe stood at the door holding it open but I asked him not to because it was disturbing to see him slowly age in front of my eyes.

That was hard! I said using a lot more adjectives.

The same was true of every updated hotel we stayed at, the carpet rose in opposition to my presence, my wheelchair sometimes groaned under my effort. I didn't let Joe push because if this is the new norm I need to be at a new norm. Fun, wow.

It was good to get home and back to being able to push easily. But on our first day back we went to buy patio furniture and I asked a clerk a question. I could tell immediately that he didn't want to deal with me, he looked for and found Joe and headed to him to answer my question. I am assertive in these situations and pointed out that he would deal with me, I asked the question. Getting the information out of him was like rolling across the soft grey matter of his brain.

Give me bad carpet any time.

Theft

We were having lunch at a small cafe in a mall near the hotel in which we were staying. The food court was a few feet down and around the corner from us. We we chatting over our meal when Joe's face froze. He said quietly to someone other than me, "Put the fucking phone away."

I turned to see a woman with a disability trailing behind her staff who was walking far to quickly and whose face was in her phone. If she had put her phone away she would have noticed that the woman with a disability was having a great deal of difficulty with the pace that she had set. The disabled woman's face was flushed and sweaty. The effort she was making to keep up and walk beside her staff showed all over her expression.

She never caught up to her staff. Not that we saw anyway. She was about 4 feet behind her. Her desperation to be with the staff was lost in the staff desperation to be somewhere else, somewhere where 'likes' from strangers were worth more than the 'would like to walk with you' from the woman with a disability.

People were watching.

They saw an uncaring staff whose message of "I can't be bothered, even for pay, to spend time with the likes of the woman with me." was strongly delivered

They saw a disabled woman whose message of "I want to feel involved and included even by those who disrespect me." looked pathetic and weak.

Everything was wrong with what we saw.

Everything.

After some thought I realized that that staff was thieving from the agency that hired her. She was thieving from the woman with a disability who probably waiting for this 'outing' and was desperate for it to be fun and fulfilling. She was thieving from the community that witnessed this, a community that should have been learning that disabled people have value and that staff provide a service.

Agencies may be very concerned about petty cash and how it balances.

They should be more worried about the theft of time and dignity from the people they serve.

Time and dignity.

That's what she stole.

But I'll bet she handed in the receipts pronto.