Thursday, August 15, 2019

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.

Sunday, August 11, 2019

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.

Saturday, August 10, 2019

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.

Friday, July 26, 2019

The Wrong Ramp

We'd had dinner in a packed restaurant, with waitstaff that had no idea how to sit a disabled customer, and were on our way out. I came through the / doors and saw that a huge truck had used the cut curb to pull back up into a parking space to unload and store equipment used in the water show that was happening just off the docks beside the restaurant. I could see that a young man had been assigned to watch over the equipment so I headed over to speak to him.

But that's not the only thing I was doing right? I was stoking the fires of injustice and feeling the violation of my space, the only cut curb anywhere near where we'd parked the car. So by the time I got to him I was in fight mode. I told him that the truck was parked over the disabled access point and that I couldn't get to the ramp. But as I spoke there was a roar from the crowd attending the event and he smiled and said, "No I don't think I can let you do that?" "What," I asked.

The truck had a long and steep ramp, used to assist with getting the equipment on or off the ramp. He repeated himself laughing as he said that he didn't think he could let me try rolling up the ramp.  I said, "No, no, I was saying that the truck is blocking the accessible ramp and I can't get down to the car. "Oh, sorry," he said, "give me a second to organize and I'll move the truck right away."

And he did. He kept giggling about his mistake and kidding me about actually trying the steep ramp. There wasn't a moment where I felt that he was resentful of all the work he had to do to move the truck. He had to move equipment that was leaning against it, he had to disassemble the ramp, he had to tie down some of the stuff in the truck. But he did it in good humour and I didn't mind waiting in an atmosphere of 'I got it, I get it, I'll do it.'

And, of course waiting there allowed me the time to put out the fire that I'd set for a fight that I didn't need to have. But you can't tell before hand, can you, when it's going to be needed.

The truck was moved, I got out, he called after me, "Sorry, man, thanks for your patience." I gave him the thumbs up sign because it was all good.


Wednesday, July 24, 2019

Late Lunch

We got to the restaurant a little later than we had planned. But what's a vacation for but to make plans and then freely set about to mess them all up?

We were greeted by a woman with a disability, she used a cane for stability and for assisting with movement. She was warm and friendly and set about setting up a table for 5, all were set for 2 or 4, with skill and ease.

The most important thing to me was that she set it up exactly right for my wheelchair. No muss, no fuss, no notice, just an accessible table whipped up for us.

I don't know if her disability played into how she provided service, but I'm guessing it might. And right then I was really thankful for her and her skill and her competence and her welcoming attitude. It isn't always so when I'm out.

There are those people that seem to be set in the way of your life, those people you are destined to run into, those people who you will never know and, after a few minutes, never see again, but those same  people can have a real impact on us and our lives. She showed me it's possible to be seated in a restaurant without show or complaint. No one noticed what she did. And that's the point. No one but me, and that, for today was enough.

Tuesday, July 23, 2019

X-Ray Pants

This morning I had to have an x-ray, a great way to start a vacation, and, yes, everything is fine. We arrived to a long line up and a sinking feeling that we'd be there for hours. Turned out that we got through the process faster than we did at the drive-thru at Harvey's We registered, sat down and were almost immediately called in.

The technician asked if Joe could come in case I needed help she couldn't give. I agreed and we all went into the room. While I was still seated she explained what I had to do which included taking off my shirt and dropping my suspenders (or, in England, braces). I was scheduled for two, one taken with my back to the machine, one taken to the side.

The first one was easy to do because I could hold on to my pants, preventing them from falling to the floor, while in the position she wanted. The next one was going to be more difficult, I needed to have my hands up holding on to a grip she installed. This meant that I couldn't hold on to my pants and that they would definitely fall.

I asked her if Joe could hold my pants up while the picture was being taken. She 'leaded him up' which meant that he had to put on a costume that made him look part samurai and part Dirk Bader. He stood behind me, grabbed my pants and for the first time in our relationship held them up.

It was hard getting an x-ray while wanting to laugh at the absurdity of the situation. Disability can be a deeply funny way to live. 

Monday, July 22, 2019

Vacation

Today we begin a week's vacation. Our hallway is lined with suitcases. Packing is nearly done. This is all stuff that Joe does and I am the exceedingly grateful recipient of his expertise. This means that I get to sit and do nothing while he makes satisfied noises every time he remembers something he was determined that he'd forget. It's just what we do.

It is my job to make the reservations and ensure that we get what we want and need. This is made easy because the staff at the hotel remember us, know that I'm a wheelchair user and work to ensure that the whole process is smooth and that my only experience at check in is 'Welcome Back!"

They have the art of customer service down to an art. To a one the staff there seem to want to make everyone feel at home. They seem to realize that, because we need adapted rooms, our needs don't call for adapted interactions.

So when I called last night to reassure myself that all was okay, I knew that it would be. And it was. I didn't have to talk toilets to strangers. (And I bless them for that.)

After breakfast we will move into getting out of here and into there.

I am so looking forward to this!