The Perils of Living with Multiple Disabilities

Back in the 2000s, when I still read the National Federation of the Blind (NFB) publications regularly, I often came across the term “primary disability”. Blindness had to be one’s primary disability to qualify for rehabilitation at an NFB center. I see the same in the care system here in the Netherlands. My primary groudn for care is mental health. The way the system works, you get allocated a care package within the category of your primary groudn for care. Some of these care packages are designed for people with multiple disabilities, but it is clear that the creators of care packaging never explored the concept of multiple disabilities in depth. For example, if you have a care package within the blindness/vision impairment category, and you have either a mental illness or a mobility disability, you qualify for a specific care package. So what if you have both of these disabilities? Too bad. Also, the assumption with people who are blind and hav eadditional mental illness, is often that they can really do most thigns independently, but need lots of care (aroudn 35 hours a week) because of their behavioral or mental health problems. Please note: if your pimrary ground for care is mental illness and you’re blind, too bad, but you can’t get this amount of care.

Indeed, when I talk to my social worker, I’m often asked what I consider my primary care need. I have so far often said that autism is my primary disability, but today as I was meeting with my therapist and social worker, I fell into some of its pitfalls: I cannot go to a workhome for autistic people, which I think would be the least unsuitable placement for me, because my autism is not severe enough. May be so, but I have mental illness,b lindness and some other, minor difficulties too.

In another area, I’m noticing the primary disability nonsense. I have maximum privileges written into my treatment plan, which means that, if I tell the staff, I can go wherever I want. Nonetheless, the nurses won’t let me leave the ward unsupervised. This is quite confusing, because I can’t get the support that people who can’t leave the ward on their own get, because that means I’d need to be moved to a locked ward, but I do not have the ability to leave the ward on my own. Consequence: I’m stuck on the ward most days.

Severel years ago, I wrote a post on my old blog htat was entitled somethign like “th ewhole is more than the sum of its parts”. That is still exactly how I feel about multiple disabilities. You cannot just say that a person’s primary disability si whatever is most visible, then add some extra points for their additional disabilities. A person’s disabilities mutually influence each other, sometimes causing a person to be more limited than their individual disabilities suggest. This needs to be acknowledged, but sadly, people like to simplify disability and care concepts too much.

8 thoughts on “The Perils of Living with Multiple Disabilities

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