Last night, I was flooded with memories of elementary school. I attended a school for the blind that was next to a school or institution or whatever for people with intellectual disabilities from fourth to sixth grade. The school for the blind I went ot also had a departmnet for those with “multiple disabilities”, which referred just to visual and intellectual disability. I mean, I attended the single-disability department even though I’m autistic and have a mild otor impairment in addition to blindness. Of course, no-one acknowledged that. Besides, like I said, “multiply-disabled” always somehow includes an intellectual disability.
I remember when our teacher told us about snoezelen. Snoezelen is a type of sensory activity where the person with a disablity goes into a room where the sensory environment can completely be controlled by that person or their staff. It struck a chord with me as soon as I heard of it. Now, more than twenty years later, it’s one of my favorite activities at the day center. It is usually catered towards people wiht severe intellectual disabilities.
At around the same time, a girl was in the news who was being restrained long-term in an institution in Utrecht. She had a mild intellectual disability, so mild that she had two years previously been able to attend a low-level high school. She was judged to be too intelligent for intellectual disabilities services but couldn’t be served adequately anywhere else. She was eventually transferred to a psychiatric institution for youth with intellectual disabilities.
This story struck an enormous chord with me. I knew I wasn’t intellectually disabled, but my school didn’t think I was very bright either and above all, I had significant behavioral challenges.
It’s a shame that, more than twenty years after this girl was in the news, still, disability services are so segregated according to IQ. I am hugely lucky that I’m allowed to use the snoezelen room and even attend the group for the most severely intellectually disabled people at my day center. My recent outbursts do get people to believe this wasn’t the right decision after all. My home support coordinator said this afternoon that, if I could be moved back to the industrial group, I may’ve been able to stay at this day center. I doubt it, since at the industrial group, I had more outbursts than now that I’m at the sensory group.
I remember being told about snoezelen once more, during a college lecture when I took applied psychology. The professor told us about it being suitable to those with end-stage Alzheimer’s or other forms of dementia. Again, not a positive image of this activity as soothing for people with any kind of disability (or no disability at all).
When I tell people about my problems functioning at day activities, I invariably hear that they’re not challenging enough for me. As much as I’d like to deny this, there is some truth to this. Indeed I get understimulated when I have to sit in a chair for twenty minutes while the other service users use the bathroom. Not that I think the others are particularly excited having to sit on a toilet for that long, but they can’t tell the staff that they’re bored. I also don’t know that I could use the snoezelen room for hours on end. Yesterday, I spent about an hour in it and that was fine, but the other service users and staff were there too. When I’m just dropped in the room alone, I manage for twenty minutes at most.
The problem is though, as much as I’d like to do more challenging activities, I need practically one-on-one support with that and that’s just not possible. The staff/service user ratio at my group is 1:6. At the industrial group, it’s 1:9. That’s just not working if I’m wanting to do any type of remotely challenging activity except for using the computer, which quite frankly I can do at home, too.
I wish I were more independent. I wish snoezelen wasn’t the only activity I can do without help. My sister said maybe I need training to learn new skills. Well, I don’t know where to go for that.