Tag Archives: Multiple Disabilities

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

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Spectrum Sunday

Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Being Powerful, Empowered, Mighty: Making My Needs Known

Today, I actually feel like writing about an experience I had this week, when I created my list of support needs and concerns for when I’m going to live with my husband. I particuarly wanted to write about my various ideas on day activities. Then again, I wanted my post to be prompt-based and have some direction and preferably be suited for a linky. Then I saw that this week’s prompt from mumturnedmom is “mighty”. Well, it was quite an empowering experience and a mighty experience at that. I don’t know whether “mighty” means the exact same as “powerful” or “empowered” and I believe these don’t even mean the same, but who cares? I am empowered, I am powerful, I am mighty, for I can make decisions on my care needs.

Seriously though, this is really empowering. After all, up until last week, I thought all responsibility for making this whole living with my husband thing work lay with me, but all control lay with my treatment team. Late last week, I was ranting about this in a Facebook group for people with borderline personality disorder and someone else said just the right things to get my butt moving. Or rather my fingers. She didn’t say much and I can hardly remember what she actually said, but I was inspired to finally start wrting down my support needs and concerns. My psychologist had been pushing me to do this, but I didn’t know how.

The first thing was about medication: who makes sure I get my meds on time, checks when I’ve run out and gets me a new supply from the pharmacy? Can I get a periodic med review with a psychiatrist? Then came concerns about my handling distress: whom to call and when f I’m in distress? What can I do myself? What needs to be done if I end up in a dangerous situation? Then came concerns about activities of daily living like making coffee (which I can do myself), preparing and serving myself food and suchlike. I didn’t have answers to many of these questions in all of these areas, except that i need to get supported day activities.

I E-mailed my list of concerns to my named nurse and was discussing day activities and recreation with her. My husband had made a few suggestions last week, but I was brainstorming with my named nurse too. I reasoned that I’d like to get my day activities from a developmental disability service provider rather than one for mental health, because they are usually more equipped to accommodate multiple disabilities and sensory needs.

Suddenly something popped up into my mind that I’d said to a nurse at my old institution a few years ago: that I’d like to try snoezelen. Snoezelen is a Dutch term with no proper English translation, but it means that a person with a developmental disability is allowed into a room which is equipped with materials to soothe and stimulate the senses. The sensory environment is completely controlable. It is also safe, like with soft walls and such, because most people who use this type of service have behavioral challenges.

I expected my nurse to ridicule me for proposing this, but she completely got me. My activiyt staff, whom I told the next day, said the institution has a snoezel room at the unit for people with intellectual disabilities and I may get approval to try it there. Of course, since this service is usually provided to people with intellectual disabilities, I may not be approved and if I do get approved, I may not be able to get along with the other clients. Well, screw that last one, which was holding my staff at the old institution back: I can hardly get along with most of my current fellow patients either.

Now I wrote my psychologist, but didn’t talk about the snoezelen idea, because I fear she will most definitely ridicule me. She seems so focused on my intelligence and my mental illness rather than my autism and sensory needs, after all. I did ask my named nurse to go with me to my next meeting with my psychologist so that she might advocate for me.

I also discussed my need for day acitivities in various Facebook groups for autism and other disabilities. Other ideas provided were yoga, swimming, trampolining (on a low trampoline) and gardening. My activity staff also said I need multiple activities that I can do during the week. If I end up swimming or doing yoga, I would like to do it at a day activity center, because then the instructors would be more accommodating than when I’d go to a regular gym or pool.

I feel much more positive, much more empowered than I did last week, even though many people or agencies may still get in the way. Like, my psychologist or social worker may refuse to refer me to a developmental disability service. Then again, my social worker said I need to do the meeting with the governnment people who decide on funding myself. These people might refuse to contract a developmental disability agency for me, or the agencies I have in mind might all turn me down. Still, if I don’s stand up for what I believe I need, I won’t definitely get things done my way.

mumturnedmom
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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.

Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.

Disability and Childlessness: It’s Complicated

I am disabled. I am childless. For a long while, I identified as childless by choice. In a way, it is a choice, because I do not experience reproductive problems that I know of. In another way, it’s not a choice, because I would’ve wanted to be a parent. I’m not “childfree”. I am disabled, and this has influenced my decision to remain childless. That doesn’t make it not a decision, but it makes the decision tougher than had I truly been childfree.

On Musings of an Aspie, there’s a post on honoring your choices as an autistic woman (or man). It is a postscript to the autistic motherhood series on the Autism Women’s Network. The post concludes that older autistic parents have a responsibility to share what they’ve learned with the younger generation of autistics. This, in my opinion, goes for autistic childless people too. As autistics, we often feel left out, and it’s important to have people whose experiences we can relate to who are older than us and can share with us what they’ve learned. Likewise, we need to be mentoring the even younger generations.

I find it extremely hard to connect to people with whom I have enough in common that we can share our knwoledge and experiences and support each other this way. This may be because I have multiple disabilities. The Internet has opened a world for me, but when, with this current blog, I began to spread my wings outside of the disability blogosphere, it also amplified my differences. It may be just me, but I see Mom bloggers everywhere.

Childlessness, like disability, is a minority status. And now that childlessness is no longer the only way for disabled women, it adds up to someone’s otherness. I’m not saying that childlessness should be the norm again for disabled women. What I do want to say is that it’s still a reality for a lot of disabled women (and men), and that it’s often still a painful reality that is complicated by prejudice and stimma both surrounding disability and childlessness. I do understand that the assumption that disabled people are childless by default, needs to be challenged, but this assumption should not be replaced with additional stigma for the person who finds their disability actually does make it impossible for them to become a parent.

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.

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.