Five Things People Usually Won’t Understand About Life with Multiple Disabilities

Julie of Counting My Spoons just posted a list of six things healthy people just won’t understand about life with chronic illness or pain. I didn’t know the first one – that migraine sufferers just can’t take their medication at the first hint of a migraine -, because I don’t have migraines, but I could relate to the others. I feel somewhat guilty about that, because I don’t have a diagnosed chronic illness, except for possible irritable bowel syndrome, which causes the least bothersome of my symptoms.

I do have multiple disabilities, and I thought I’d do a similar list of things people who don’t have these disabilities won’t understand. These all seem to boil down to “we are individuals”, but for some reason, this is extremely hard for the non-disabled to understand.

1. We can’t just choose one of our disabilities and get services for that and then be fine. Seriously, why do you think it’s called having multiple disabilities? My social worker once asked me which is my most significant disability, so that we would find a supported housing agency suited to that. I know, that’s how the system works, but quite frankly, it’s nonsensical.

2. We’re still multiply-dsabled even if we don’t have an intellectual disability. It’s a common idea that “multiply-disabled” means intellectually disabled plus something. In reality, those who are blind and autistic like myself, those who are deaf and wheelchair-using, etc., may still identify as multiply-disabled. I identify as multiply-disabled partly to dismantle the myth that only those with an intellectual disability struggle with “additional needs” as it’s politically correctly called.

3. You can’t just take apart our needs in terms of which needs are due to disability A, which are due to disability B, etc. and then have a complete picture of our needs. For one thing, some disabilities cause a variety of impairments in many different areas and cause different impairments for different people. For another, disabilities influence each other. For example, I am blind, so you’d think I could be using my hearing to compensate. In reality, because of my difficulty filtering out background noise, I can’t. This is somewhat understood by people working with the deafblind, but if you have other disabilities, not so. In general, however, not all our needs may be explainable by a disability we’ve been diagnosed with. I remember at one point when I was at the locked psychiatric ward a man was there who had a vision and hearing loss in addition to his psychiatric illness. A nurse told him that he had to clean up the table after eating, because “he’s doubly-disabled but not triply-disabled”. Now I’m not saying that multiply-disabled people should be exempt from doing chores. I’m just saying that his apparent unwillingness to do the task might as well be inability, regardless of whether this is thought to be “normal” for a person with his particular combination of disabilities. (FYI: I consider mental illness a disability, so in that respect the man was triply-disabled, but in the psychiatric nursing profession, it’s usually not seen this way.)

4. Mild, partial or invisible disabilities contribute to our constellation of needs too. This isn’t applicable to me, because I have a visible disability, but it was applicable to some extent to the man at the locked ward I menitoned abov. He was partially sighted and hard-of-hearing, so because of his remaining sight, he was expected to do tasks I was exempt from. As I said, disabilities influence each other, so it may’ve been that he was in some areas more impaired than I am, but because all of his disabilities were partial, he was often regarded as more or less non-disabled.

5. We have absolutely no obligation to have an explanation for our every experience that is out of the ordinary. You have strengths and weaknesses too, so do we. I’ve often felt like I needed to have a diagnosis to explain my every difference. In reality, I’m an individual with my own sense of self, my own interests, my own stronger and weaker sides. Like I said above, our disabilities influence each other, but so do our personality traits. I am not the sum of my disabilities. I am myself.

5 thoughts on “Five Things People Usually Won’t Understand About Life with Multiple Disabilities

  1. Amen! Great post. I don’t have the visible disabilities, but I am learning more and more what it’s like to have my disabilities be visible in some way just by dealing with disability accommodations at school. Even though my disabilities are invisible, teachers now know that I have some sort of disabilities (even if they don’t know what they are). It can be frustrating at times, when they don’t honor the fact that they don’t need to know and that no one else needs to know that I have accommodations. I’ve found it easy enough to attribute a lot of my needs to migraines (the most commonly used acc. are due to the migraines) but the ones that can’t be are also the ones hardest to explain (and I shouldn’t have to). I’ll be having a discussion with an instructor today about my needs, so wish me luck. I’ve reached a point where I’m going to have to ask for her help to allow me to take tests in a way that doesn’t cause me added pain, and I’m still not sure what that help is going to entail.

    Liked by 1 person

    1. Julie, I’ll be wishing you lots of luck. I’ve not had luck asking for accommodations at university. The university in fact prided itself on its recently inplemented autism buddy program, but someone from the student counseling service (which also arranges for disability accommodations and stuff) told a newspaper that “a blind autistic person who wants to do something communicative is going to have a really hard time”. That was two weeks before school started so they hadn’t even known me apart from my diagnoses and my intended major (linguistics). Then when I started, some professors were really accommodating – one arranged for me to sit in a separate room attached to the auditorium because I couldn’t cope with the crowds. Others and particularly the director of studies and the student counselor on my case weren’t helpful at all and kept saying “it’s a university not a therapy center” and that “all other blind students” or “all other autistic students” can get by without an accommodation I requested. Geez I think I’m going to write a post on this sometime, sinc emy comment got so long. Anyway, I’ve heard that in the U.S. in this respect services and anti-discrimination protection are better than here. I really do hope you get what you need.

      Liked by 1 person

  2. My experience is from the viewpoint of the mom with a daughter who has multiple disabilities. As such I can totally relate to #1 on your list. There were programs for kids with high functioning autism who don’t need aides and programs for kids with epilepsy, but no programs for both. She needs a 1:1 aide because of possible seizures and lower functioning/ aggressive behavior and that is almost impossible to find! I am her aide at Flash Club and I am currently trying to create a music and movement program for kids like her!.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s