Tag Archives: Deafness

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.

What’s in a Name: Dual Sensory Impairment, Deafblindness, or What?

It’s always interesting to see how the language surrounding disability evolves over time. In the DSM-IV, for example, “mental retardation” is the accepted term for what is now called intellectual developmental disorder in DSM-5 and intellectual disability by most professionals and the general public. I had to modify a blog post from 2007 when I republished it here, because it had “mental retardation” in it. This term is totally out of use now.

With regards to visual and hearing impairmetns, there are even more varied terms. “Blindness” and “deafness” are the most common, but “hard of hearing”, “hearing impairment”, “visual impairment”, “low vision”, “partially sighted”, etc. are also used. With regards to people who have both a vision and hearing impairment, the question is asked by Wittich et al. (2013) what term should be used for research purposes: deafblindess, dual sensory impairment, or somethign else entirely? The authors reviewed the literature and surveyed a number of professinals and reseachers in the area of deafblindness/dual sensory impairment/whatever. They found that “deafblindness” was more commonly used in journals speciifcally catering towards the vision or hearing field, whereas “dual sensory impairment” was used in more general journals and in journals with a higher impact factor. Similarly, those people surveyed who considered themselves primarily involved with research, preferred “dual sensory impairment”, whereas rehabilitation professionals preferred “deafblindness”. The study authros themselves propose “combined vision and hearing impairment”.

Wittich et al. do not discuss the cultural implications of each term, which were actually what motivated the DSM-5 committee to change the term for intellecutal disability more than did science. Wittich et al. also didn’t survey people with a combined vision and hearing impairment themselves.

Just my thought, but I find “dual sensory impairment” particularly confusing. I also find “combined vision and hearing impairment” really unnecessarily lengthy unless it serves a particular purpose, such as clarifying that hte individual has some vision and/or hearing. It also wouldn’t surprise me if people with acquired vision and hearing loss would prefer “dual sensory impairment” or “combined vision and hearing loss”. After all, people with an acquired disability, in my expeirnece, insist more on “person first” language, whereas those born with their disability prefer to see it as an inherent part of their identity and use language accordingly. I’ll be curious to know how the terminology in this area evolves over the next so many years.

Reference

Wittich W, Southall K, Sikora L, Watanabe DH & Gagné JP (2013), What’s in a Name: Dual Sensory Impairment or Deafblindness? British Journal of Visual Impairment, 31(3):198-207. DOI: 10.1177/0264619613490519.