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.
Does the family want a happy young adult - or a child they can control?
ReplyDeleteThis young lady's family may have to think a little harder and figure out what supports she will need as a married woman.
I shouldn't have to take my husband with me when I go to the doctor's to discuss my pain needs, but I did. Why, because I had already had indications - even though they were small - that the doctor didn't have a clue, had nothing he could actually help me with in dealing with the ME/CFS, and had strong opinions about reducing painkillers. H being there with me made him almost unnecessary. Listening was the missing skill in the doctor, and, with a witness, he listened. I went in vastly overprepared, and came out with what I wanted: the doctor to read a few of the pages I brought in, and the required prescription to continue the painkillers I've been using a long time, have never abused or increased, and keep trying on my own to decrease.
Me! An adult woman with a PhD in Nuc. Engr.!
Your young friend was really smart to know she needed an ally - to make her family LISTEN. May I wish her the very best?
As you say, words matter. A lot.
ReplyDeleteI hope they are deliriously happy,or as happy as anyone crazy enough to get married can be. But that's another story altogether. Anyhow, are you OK ? You are missed.
ReplyDeleteThis kind of thing makes me so angry. It’s like parents consider them to be perpetual children because disabilities are involved. I can’t tell you how many times I was asked to assist my clients in obtaining basic adult regard from others. One of the most ridiculous was a mother calling me because she and her husband didn’t like the haircut their 27 year old son chose to get while residing in a supported living situation. I responded with “So? I don’t choose my 25 year old son’s hair style.” Another pinnacle of idiocy was when a behavioral consultant wanted to list substance abuse on my 24 year old client’s treatment plan because he stole a beer and drank it. He stole it because they wouldn’t let him purchase it. I remember telling the consultant that I had a cocktail the night before and did she recommend inpatient or outpatient treatment?
ReplyDelete