Tag Archives: Intellectual Disability

Are My Day Activities Challenging Enough?

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.

Day Activities: Why Do I Seem to Have High Support Needs?

Yesterday, I had a meeting with my day activities and home support staff, my comunity psychiatric nurse (CPN) and the social consultant (local authority person who decides on care funding) in charge of my case. My mother-in-law also attended. The reason for the meeting was my trouble functioning at day activities.

I go to a day center for people with intellectual disabilities and attend a group within the center for people with severe intellectual and multiple disabilities. I don’t have an intellectual disability, but did seem to do best at this sensory-based group up until recently. Then, three new service users joined us, leading to increasing stimulation, stress and staff workloads. I was increasingly overloaded and irritable, which led to the staff cutting my hours because they couldn’t deal with me on top of the other high-support service users for a full day.

The problem is there’s no clear-cut diagnosis to back up why I function best at a low-stress, sensory-based, high-support group. I mean, yeah, I’m blind, but most people who are blind can work regular jobs. Yeah, I’m autistic, but only diagnosed with autism spectrum disorder level 1 (ie. “high-functioning” autism or Asperger’s Syndrome). Yeah, I have mild motor impairments, but my doctor doesn’t know or can’t tell me to what extent they’re diagnosable (as mild cerebral palsy or something else). Yeah, I have mental health issues, but no-one has a clue to what extent these affect me and what they’re even diagnosable as.

As a result, some professionals and non-professionals choose to deny I have high support needs and tell me it’s all dependence, manipulation or attention-seeking. I was lucky that, with one of these professionals being my former psychologist who got me in touch with my current day center, the day center staff and management were up until recently more than willing to accomodate me. For instance, I started day activities at the industrial group at this center, but was soon moved to the sensory group despite, like I said, not even having an intellectual disability, let alone a severe one.

Now that I’m even falling apart at this group, I hear different opinions on where to go from here. At one point, my home support coordinator said maybe the gap between myself and the other service users at the sensory group is too wide, so we need to look at a different kind of place, like a sheltered art shop. I disagreed and not just because my art-making skills are mediocre at best. At more “job-like” day activities places like this, there’s usually more pressure and less support. My day activities staff agreed, adding that I’d tried the industrial group already.

My CPN’s coworker suggested a care farm. As much as I love animals, I know I won’t even be able to navigate a farm without a sighted guide, let alone care for the animals without one-on-one. My mother suggested I look for day activities tailored to the blind. These don’t exist in my area. Besides, I could barely function at the leisure groups at the blindess training center I attended in 2005. My mother said I may be able to now, but I think it unlikely. These places expect a level of independence I don’t have. I mean, I’ve seen my partially sighted friend make soap completely independently after being instructed by me just once, while I still need practically hands-on support after many attempts.

I’m on the verge of crying as I write this. I completed grammar school, for goodness’ sake! Granted, I burned out the minute I left, but I did it nonetheless. Why can’t I even function at a group where people with profound intellectual disabilities can? Or am I really one giant dependent, manipulative, attention-seeking waste of resources?

My CPN is going to contact the Center for Consultation an dExpertise on me. In 2010, they were briefly involved in my case. The consultant wrote in her report that she thinks it’s weird that I’m so cognitively capable and yet cannot do simple activities of daily living such as prpearing my own breakfast. She also wrote something in the report about not knowing whether I’m eliciting care. In other words, she couldn’t say whether or not I’m just one giant dependent, manipulative, attention-seeking waste of resources either. Sigh.

Cuts to My Day Activities Hours

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

Test Scores Don’t Determine Ability to Get By in Life

On a Dutch blog by the mother of a child with autism, I read about the impact of IQ on school choice. The child in question is intellectually disabled. I am not. However, I can totally relate to measured IQ impacting the choices made for me regarding my education.

I have a verbal IQ that was at one point measured at 154. I have had many IQ tests other than this one. I didn’t score as high on all. On one, I didn’t even score within the gifted range. Nonetheless, my IQ score of 154 is mentioned in every diagnostic report about me.

This is a verbal IQ. IQ is composed of two components: verbal and performance. My perfomrmance, or non-verbal IQ cannot be measured because I’m blind. This doesn’t mean it doesn’t impact me. Professionals involved with autism have consistently suspected that my performance IQ is significantly lower than my verbal IQ and this could be one reason my abilities are constantly overestimated. It cannot be measured, however, so let’s just continue expecting excellent, or at least good performance out of me. Or not.

The mother writing the blog I mentioned above desperately wanted her child to have an IQ above 70 so that he could go to a school for children with behavioral disturbance rather than a school for children with an intellectual disability. In my own case, my parents desperately wanted me to score high so that they could convince the special school for the blind to recommend me to regular education. Finally, they needed not just to prove that I am intellectually capable, but that I excel academically, because they had decided I should go to grammar school. I had to have a standardized test score above a certain number and thankfully I scored within the expected range. The special school principal called my parents in total shock, because she didn’t have a clue that I was this capable.

In real life, unfortunately, it takes more than academic excellence to excel, or even to get by. It takes more even than a high verbal IQ. More than a high IQ in general, in fact.

Why do people rely so heavily on test scores to determine what they can expect out of someone? Because my abilities are consistently overesitmated, the autism consultant recommended further testing to determine why I function at a much lower level than my (verbal) IQ would suggest. My psychologist dismissed this idea. I understand, because it takes a lot to be able to assess someone who is blind. Besides, I’m not so sure I’d be able to take yet another exam, as that’s what it feels like.

Why don’t we just understand that people are different? People have different abilities and difficulties and they shouldn’t all have to be Einsteins or prove why they’re not. Yes, I know Einstein is sometimes suspcted of having had practically every neurodiverse codnition under the sun. I don’t care. My point is that, if someone doesn’t get by, they need help and it doesn’t matter whether a test score says they should be able to get by.

My (Somewhat Hypocritical) Opinion on Force in Mental Health and Developmental Disability Services #Write31Days

31 Days of Mental Health

Welcoem to day 25 in the 31 Days of Mental Health. Today, I’m inspired by yet another question from the 30-day mental illness awareness challenge. For day 25, the question is about your opinion on force or coercion in mental health.

I used to be a strong opponent of any form of coercion in mental health. I remember once in late 2007, when I was still on the acute unit, a fellow patient being medicated against their will. I saw this as a particularly nasty violation of the patient’s human rights, worse than for example seclusion. Now I know that for some people, if they have to choose between seclusion and rapid tranquilization, their choice is not always seclusion.

I used to believe, in my naivety that there is always an alterantive to force in mental health. I still believe there is in most cases. For example, studies of involuntary outpatient treatment don’t compare the programs to the same level of care but without the component of force. If they did, maybe it’d be shown that there is no advantage of forced treatment, and it is just the intensity of care that makes the difference. In this light, I remember one particularly poignant interaction I had with a nurse on the acute unit. She said that I’d be secluded if I needed more care than they could provide. Indeed, involuntary outpatient treatment is generally seen as a way of averting hospitalization. Now I’m not a big fan of psychiatric hospitalization, but I cannot help but believe involuntary outpatient treatment is just a convenient (for the providers and the government) way of saving money. So are most forms of force in mental institutions, as my interaction with the nurse illustrates.

Of course, a few people cannot be kept safe even with constant one-on-one attention, assuming the government would allow this. A notable example is the case of Brandon, a young man who had been restrained in his institution for people with developmental disabilities for years when the newspaper got word of it in like 2010. I was infuriated at such inhumane treatment as restraining a person for years, but my husband and many other people I spoke to countered that there simply was no alternative. Medications hadn’t helped (and besides, that’d be another form of force) and Brandon was so aggressive that he’d attack anyone coming close.

That being said, still, in many cases, force in mental health and developmental disability care is used as an alternative to proper care. I remember one example that I read about at the time Brandon’s case was in the news. A proponent of electroshocks as aversive therapy for people with severe self-injurious behaviors presented the case of a person who was hitting his eyes so vigorously that he was at risk of becoming blind. He described the situation of the nurses conferring at the nurse’s station while the man was blinding himself in the next room, adding something like: “And what quality of life does a person with an intellectual disability who is also blind have?”

I cannot begin to tell you all the things that are wrong in this situation. Nurses sit at the nurse’s station conferring (or drinking coffee) way too much rather than taking care of their patients. We do not know whether one-on-one attention would’ve prevented this man from blinding himself, because there was none. INstead, his treatment team chose to set him up with a shock machine. In addition, I totally understand a sighted, intellectually capable person’s judgment that an intellectually disabled person who is blind has no quality of life. However, the proponent of shock therapy hardly considered the effect whatever causes this person to self-injure has on his quality of life, possibly multiplied by the effects of electroshocks. We do not know whether the person in question had a painful medical condition. I assume the cause of his self-injurious behavior was unknown or could not be taken away, but I’ve heard parents and professionals advocating for aversives or restraints when the cause of problem behavior is known and can be removed.

I do use some double standards though. Being in a mental institution myself, and especially having seen some of the more severely mentally ill people, I have lost some of my naivety regarding forced treatment. Perhaps less self-righteously, when soemone bothers me, I’m happy to have them secluded, restrained or medicated. There are some people on my unit who are very regularly verbally aggressive or simply very annoying when psychotic. In those cases, though I would like to say I oppose force, I’ve actually been relieved when the nurses gave these people some PRN medication, often with only some sembleance of consent. I would like to believe that the guys who constantly talk to their voices are actually helped by a low-potency neuroleptic, but at least I do not know whether these people are bothered by their voices and if so, whether the PRN medication actually quiets their voices. I should care, but when it’s past 10PM and I want to sleep, quite frankly I don’t.

Supporting Someone Who Self-Injures

I have a diagnosis of borderline personality disorder (known in the UK as emotionally unstable personality disorder). BPD is sometimes known in the Netherlands as emotion regulation disorder, because it causes people to be unable to deal with intense and rapidly shifting emotions. BPD sufferers get stressed much more easily than those without mental health problems. They also tend to cope with stress ineffectively. One destructive coping mechanism that is common in BPD is self-harm.

Self-injury is not unique to people with BPD. In fact, starting with DSM-5, non-suicidal self-injury is its own diagnosis in the psychiatrist’s manual. Before then, if a person self-harmed, they were often incorrectly diagnosed with BPD, which has many more symptoms than just self-injury.

Self-injury is also common in people with autism, which is my other diagnosis. It is thought that people with autism, particularly those with a co-occurring intellectual disability, self-harm as a way of self-stimulatory behavior (to regulate sensory input) or as a way to communicate. For example, they might start to self-harm when they are overloaded sensorially or cognitively, or when they are in pain.

People with BPD are thought to self-harem to regulate their emotions. For instance, they may feel intense hopelessness or rage, or they may conversely feel numb and self-harm to have any sensation at all.

Self-harm is commonly thought of as a way of manipulating or attracting attention. This may be true, but isn’t necessairly. Many people feel a lot of shame about their self-harm. I, for one, don’t tend to self-injure to garner attention of others. I self-harm for many reasons, one of them being expressing emoitons to myself.

It is important to realize that people who self-injure, no matter their diagnosis, are in distress, be it physical, sensory, cognitive or emotional. It is important to find out what precedes the self-injury and what follows it. Don’t make judgments about what goes on inside the self-injurer’s mind. For example, I commonly start self-harming when I get frustrated trying to communicate my needs to my staff. It may then be easy to assume I do it “for attention”, because the staff give me more one-on-one attention when I self-injure. However, if I am able to communicate my needs effectively, I don’t self-injure to get attention. Behvior is communication, but bad behavior is not always intended to be malicious.

There are different ways of supporting self-injurers. Prevention is the first step. Some people, particularly those with emotion regulation disorders, may benefit from mindfulness and other skills training in a form such as dialectical behavior therapy. Others may benefit from augmentative or alternative communication methods to signal they’re in pain or overloaded. I need a little of both. I practise emotion regulation skills and mindfulness, but sometimes I also need support in the area of communication. For example, I cannot always communicate when I need a staff member to help me with something, be it emotional support or a practical task. Signaling cards, gestures or other alternative or augmentative communication may help in this situation.

When someone self-harms, it is of course important that their physical wounds be taken care of if they cannot do this themself. I find it helps most when someone doesn’t make a big deal out of my self-injuring when taking care of my wounds. Some professionals advocate limiting contact for a day or more after a person has self-injured, reasoning that in that case they have solved their problem already, albeit in a destructive way. Though I find that a bit of distance is good shortly after I self-harm, it is still important to make sure the person is safe from further harm. I do also find that I want to discuss the situation later when I’m calm, so that I can learn what better strategies will help me in the future.

Everyday Gyaan

Mental Illness and Autism #AtoZChallenge

Welcome to day thirteen in the A to Z Challenge. I am late once again to write my post, because I have still not mastered the skill of planning ahead and I was out of town all day.

Today’s post is on mental illness. Autism, of course, is not a mental illness; it’s a developmental disability. However, many people with autism experience mental health problems or mental illness. In fact, studies show that as many as 65% of people with Asperger’s Syndrome have a co-exisitng psychiatric disorder.

Anxiety and depression are the most common mental health problems experienced by people on the autistic spectrum. It may be hard to diagnose these problems because of autistic people’s different ways of expressing and connecting to emotions. For example, I once read about a boy with Asperger’s Syndrome who suddenly stopped launching into lengthy monologues about his topic of interest. People thought that he was doing better, because, after all, he was displaying fewer autistic symptoms. On closer observation though, the boy was found to be severely depressed.

Autistic people might display a number of symptoms that indicate they are suffering from comorbid depression or anxieyt. For example, they may become completely withdrawn, may experience an increase in obsessional behaviors, or may have suicidal tendencies. Paranoia, aggression or substance abuse are also indicators that the person with autism is experiencing mental illness.

Treatments that are effective for anxiety, depression or obsessive-compulsive disordeer in the general population, often are also effective for higher-functioning individuals with autism experiencing these symptoms. However, it is important that psychiatrists be aware of the person’s autism spectrum disorder. For example, if a person is experiencing depression because of loneliness, they may need to be provided with social skills training in addition to cognitive-behavioral therapy or medication.

In the above paragraphs, I mainly talked about mental health problems in people with Asperger’s Syndrome or high-functioning autism. Of course, autistic people with an intellectual disability or those who are non-verbal, can also experience mental illness. In fact, it is thought that mental illness is more common in people with an intellectual disability than in the general population. In people with an intellectuall disability, it is hard to diagnose depression and anxiety. Depression may often be misdiagnosed as cognitive decline or dementia. People with an intellectual disability may show aggression as a symptom of depression too. This may lead to them being misdiagnosed and not getting adequate treatment.

Intelligence and Autism #AtoZChallenge

Welcome to another day of the A to Z Challenge on autism. Today, I will discuss autism and intelligence.

First, what is intelligence? Intelligence is generally defined as a person’s overall cognitive ability across a number of domains, such as verbal comprheension, perceptual reasoning, working memory, etc., as measured by standardized IQ tets. Examples of IQ tests include the Stanford-Binet test used mostly in the U.S. and the Wechsler scales used more in Europe.

An average IQ score is 100. IQ follows the bell curve by which, the further a score deviates from average, the fewer people have this score. The standard deviation used on IQ tests is 15 on the Wechsler scales. This means that an IQ of 70, which is defined as the cut-off for intellectual disability, is two standard deviations below the norm. Approximately 2% of the population have an IQ below 70.

On IQ tests, the score is usually divided in a verbal commmponent and a non-verbal or performance component. Autistic people commonly have a gap between their verbal and non-verbal intelligence quotient. Some non-verbal autistic people show a dramatic increase in their IQ scores once they learn to type. Other people, usually diagnosed with Asperger’s Syndrome, have a high verbal IQ but a lower or even below-average non-verbal IQ.

It used to be thought that autistic people usually had a low IQ or intellectual disability. Current estimates are that approximately 40% of children with autism spectrumd isorder also have an intellectual disability. Children diagnosed with Asperger’s Syndrome by definition do not have an IQ below 70. However, some people with Asperger’s score as borderline intellectual functioning (IQ between 70 and 85) and may benefit from services for people with an intellectual disability.

IQ may be a predictor of how capable a person will be of becoming independent. However, other factors play a role too, such as adaptive functioning. Young children with Asperger’s usually do not have problems with self-help skills or adaptive funcitoning (other than that required for social interaction). However, as children mature, more problems with adaptive functioning in general may arise. I unfortunately have never had an assessment of adaptive functioning, so I don’t know how I’d score. However, people are usually surprised at my ability to use the computer but not, for example, cut up my own food or take proper care of my personal hygiene without prompting.

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.