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 an dautistic 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, wich 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.e 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.

Preemie #WotW

As I said on Friday, I’ve been pondering my premature birth a lot lately. This week I’ve been pondering it so much that I’ll choose “preemie” as my word of the week. For those who don’t know, I’m myself a preemie, not a parent of one. This brings about some unique challenges that I’ll share below.

Being a preemie, I am a statistical survivor – I “beat the odds”. Back in 1986 when I was born, it was the era of infinite possibilities for neonatology, and doctors were treating and keeping alive whoever they could. That’s changed. In 2001, I became aware of the fact that in the Netherlands, preemies born at under 25 weeks gestation, are not treated. It isn’t that the doctors here can’t – they’re probably as capable as doctors in the United States, where 23- and 24-weekers are treated and surviving regularly. Rather, doctors here believe that the quality of life of preemies born at under 25 weeks, would be too poor. My treating neonatologist, Dr. Willem Fetter, was quoted several times in newspapers as saying that sometimes he meets a former preemie and thinks: “What have we done?!”

This sentiment does not seem to be confined to the Netherlands. As Sue Hall says in For the Love of Babies, neonatologists no longer have an urgent need to save everyone they can. In the U.S., however, parents have a say.

I was born in 1986, in the era of infiinite possibilities. When, after I suffered a severe brain bleed, my parents questioned my quality of life, Dr. Fetter bluntly informed them that the staff were keeping me alive and not to interfere. I at one point read an article on abortion survivors, and it included the statistical survivors, living in areas where many abortions take place or for example those with Down Syndrome, but also the “wanted survivors”. Wanted survivors were those whose parents contemplated aborting them but ultimately didn’t. I can very strongly identify with the “wanted survivor” statement, because, even though my parents had no choice to keep me alive or not, they did eventually have a choice to raise me or not, and they chose to raise me. Wanted survivors commonly feel that they somehow need to prove their right to life, as if their parents might retroactively abort them or in my case take me off life support. This is not possible of course, but I can completely relate to this feeling.

That being said, over the past week I’ve felt a roller coaster of emotions as I read two books. One is For the Love of Babies by Sue Hall, which I reviewed on Friday. The other is Preemie Voices by Saroj Saigal. I will review this book too when I’m finished. It contains a collection of letters from former preemies who are now in their thirties. They were born between 1977 and 1982 and all weighed less than 1000 gram or 2lb 3oz. Some have disabilities and some do not. The aim of this book is to provide hope to parents of the preemies of today, but the author is also honest about the fact that some preemies still end up with severe disabilities. Of course, the book is directed at parents.

I feel validated at finally having found a book which includes the voices of adult preemies, after searching unsuccessfullly for a similar book published in like 1996 I’d heard of. Yet I still feel alone, because no-one had the experiences I did. Of course a book, unless I write it, cannot represent my perspective. Maybe I said this on the blog before, but if I ever write my autobiography, it’ll get the title of the 2004 newspaper article in which Dr. Fetter first uttered the “What have we done?!”. Its title is more optimistic: “Some former preemies will later go to university.”

The Reading Residence

Book Review: For the Love of Babies by Sue Hall

A few days ago, I stumbled across For the Love of Babies by chance and immediately wanted to purchase it. I love medical stories, and I am a former neonatal intensive care patient, so this boook seemed perfect. And it’s not been disappointing.

Synopsis

What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.

Review

In this book, Dr. Hall talks about a variety of patients. Most people do know that premature infants will spend time in the neonatal intensive care unit (NICU), but that so will babies with severe birth defects and babies born addicted to drugs, is a lesser-known fact. Although a large number of Hall’s stories are about preemies, there are also stories about babies who need to be in the NICU for other reasons, and stories about preemies who happen to aso have severe birth defects or are born addicted. The babies Hall treats range from a baby born with trisomy 18, a formerly thought to be lethal birth defect, to a baby born with Down Syndrome to a fifteen-year-old mother, and from a relatively “normal” preemie to preemies experiencing the most devastating complications. Some of the babies die, but the majority survive.

Hall includes in her stories not just the medical aspects of caring for NICU patients, but also the social and emotional aspects influencing the families and babies. For example, she ponders a mother’s reasons for using cocaine during pregnancy, leading to her child’s premature birth and ultimately death. Hall describes with caring even the bleakest scenarios. For example, one mother delivers a baby with anencephaly, a birth defect causing the baby to have virtually no brain and die shortly after birth. This mother had previously lost a baby to stillbirth who was just whisked away from her by the obstetrician. In the case of her anencephalic baby, Hall makes sure the baby and family are all as comfortable as possible and have every opportunity to love the baby until her death and even care for her afterwards.

Hall shows us not only the families’ and babies’ struggles, but also her own. For example, it’s clear that she feels disappointment with the substance-abusing mother abandoning her child shortly after he can go home, and sadness for the baby she resuscitated in the delivery room but who died of sudden infant death syndrome several months after going home.

Lastly, it is clear that Hall is very much in favor of giving parents as much control over their babies’ care as possible. I remember hearing about my own situation in which my treating neonatologist told my parents that the staff were keeping me alive and not to interfere. Usually in Hall’s stories, parents want more aggressive treatment than she recommends, sometimes with good outcomes, such as in the case of the little girl who sings to Hall at her unusually late follow-up appointmnet at four years of age.

Hall ends her book with several appendices full of advice for parents of NICU patients. I only skimmed through these, but I’m sure many parents will find the advice extremely useful.

Book Details

Title: For the Love of Babies: One Doctor’s Stories About Life in the Neonatal ICU (SmashWords edition)
Author: Sue Hall
Publisher: WorldMaker Media
Publication Date: July 2011

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Racism and Black Peter

Last year, not for the first time but for the first time I did notice, debate sparked in the Netherlands about the St. Nicholas celebration and the color of “Zwarte Piet” (Black Peter), St Nick’s helper. I didn’t pay much attention to the debate, but when a number of my Facebook friends signed the “Pietition” to keep Black Peter black, I did so, too. I had never thought of Black Peter as referring to slavery. Possibly, it’s because I didn’t know that he was decorated rather steretoypcially with red lipstick, earrings, etc. More likely, it’s because I possess White privilege and I horribly neglect racism in my attempts at educating myself about minoriyt points of view.

Around the discussion last year, my husband introduced me to a point of view which said that apparently White people’s enjoyment of the tradition is more important than Black people’s dissatisfaction with it, and this is racist. We, and I include myself here, often say that Black people who complain are just “professional niggers” shouting “racism” at every opportunity to do so. Then again, I for one am pretty well-known for calling out ableism (discrimination of people with disabilities) at every opportunity at least on my blog.

I understand both points of view. White people insisting on tradition probably aren’t otherwise racist, rather more likely having trouble shifting perspective from their own privileged stance to the minority person’s. Of course Black Peter has got to be black, everyone knows this, because I’m in the majority here and I know. On the other hand, Black Peter does have a traditional helper role, which could easily be interpreted as a reference to slavery (and it is likely that the historical St. Nick had slaves too, though they may not have been Black). Tradition is important for many people, but can’t we shift it a little bit for some people’s comfort?

St. Nick will arrive in the Netherlands in Gouda on November 15 this year. The St. Nicholas committee has decided to include a majority of black Peters, but to include yellow-faced “Gouda cheese” Peters too. That way, they give both parties a little of what they want, but I doubt either will be satisfied. Particularly some people supporting traditionally black Peters have radicalized over the year a bit towards a more hostile form of racism rather than mere ignorance.

Mama’s Losin’ It

To My Baby Self

I have been thinking a lot about my life in the context of premature birth. It may be because I’m currently reading For the Love of Babies by Sue Hall, a neonatologist writing about her experiences treating preemies and other sick babies.

Today I also came across a writing prompt for PTSD survivors, to write to yourself before any trauma occurred. Since my trauma started right with my NICU experience, and I’m over most PTSD symptoms now, I will instead write to my baby self reassuring her that things’ll be okay in the end.

Little baby, born too soon
You feel so insecure
But let me tell you, you’ll be fine
Of that I am sure

You are too young to realize
That you are here to stay
In this world that may be harsh
You will be okay

Times are hard on you, you feel
So often in pain
If you could tell me, would you say
That your life is in vain?

I will tell you, it is not
Your life is worth the fight
I am your older self and feel
That you and I came out alright

Some people may think of you
That you should not survive
But guess what, you did exactly that
And I am here and thrive

You will have many hardships ahead
But please persist and cope
I will wait here to remind you
Not to give up hope

Motor Deficits: Dyspraxia

I have had mild motor deficits all my life. Since I don’t know whether they have ever been diagnosed and if so, as what, I try to learn about conditions such as developmental coordination disorder, and strategies that work for people with similar problems.

Dyspraxia is similar to developmental coordination disorder (DCD). DCD is a somewhat misleading name for the whole construct of dyspraxia, as dyspraxia can, besides fine and gross motor skills, also affect speech as well as sensory processing. Dyspraxia is seen as a subtype of sensory processing disorder (sensory integration dysfunction) where the brain has trouble interpreting and responding to the body’s movements..

According to the National Center for Learning Disabilities (NCLD), there are several different types of dyspraxia. These are:


  • Ideomotor dyspraxia: where a person has trouble executing single-step motor tasks such as waving goodbye.

  • Ideational dyspraxia: problems occur with multi-step tasks, such as brushing teeth, making a bed or putting on clothes in the right order.

  • Constructional dyspraxia: affects ability to establish spatial relationships, for example, moving an object from one place to another correctly.

  • Oromotor dyspraxia: affecting the ability to control the muscle movements necessary for pronouncing words.

Dyspraxia can cause many different problems at various stages in development. The NCLD lists these difficulties by age. Young children may have trouble learning to crawl, roll over, walk, jump or skip. In adition, they may have trouble in the following areas:


  • Prnouncing words and being understood.

  • Developing hand preference.

  • Sensitivity to touch, such as clothes touching the skin, hair-combing or tooth-brushing.

  • They may bump into things frequently>./LI>

As children age, the following difficulties may emerge:


  • Poor pencil grip and handwriting.

  • Difficulty with fine motor tasks such as buttoning clothing and cutting with scissors.

  • Problems in playing sports.

  • Difficulty sensing direction.

  • Difficulty speaking at a normal rate or volume.


Additionally, children with dyspraxia may have trouble with social skills and have phobias or obsessions.

Teens and adults with dyspraxia may have problems in the following areas:


  • Speech control, such as volume, pitch, articulation.

  • Writing and typing.

  • Over- or undersensitivity to touch, light, smell, taste, etc.

  • Personal grooming and other self-help tasks.

  • Cooking and other household tasks.

  • Driving

The Dyspraxia Foundation lists many other symptoms of dyspraxia, such as motor overactivity, excitability, messy eating, lack of sense of danger (probably due to sensory seeking behaviors, as an example the Foundation lists is jumping from heights).

I do not have all symptoms of dyspraxia. For example, I am very much right-handed, though an old educational psychologist’s report says my lateralization was poor (at age eight). Some symptoms can also be explained by my blindness (such as my bumping into objects). I am, however, told that my messy eating, oromotor difficulties, difficulties with complex tasks such as making a bed, balance problems, and sensory over- and underresponsivity, are not normal for a blind person. I do not truly want a label for these, but I am finding that it is extremely hard for me to explain these problems to my treatment team, and they affect me to a great extent.

Autism and Blindness: Reflections on My Diagnosis

Today, I read a post by an autism MOm feeling lucky that her children were diagnosed relatively early on. It caused me to reflect on my late, but not exceptionally late diagnosis of autism. I was diagnosed at age twenty. This was not because no difficulties were noted early on, but because my parents felt a diagnosis would be limiting me, so they didn’t seek one. And I can see why.

I was autistic all my life. I was autistic when the school questioned my intelligence because of my poor behavior and what I can only think was underachievement. I was autistic when I was finally accepted into a high level, mainstream high school. In 2003, I attended a performance by some of my teachers who were mocking school policy, and one of the things they mocked was the school’s overrepresentation of special needs and gifted students. I had three of the conditions they mentioned the school had perfect programs for: intellectual giftedness, autism and blindness. Nonetheless, if my autism had been diagnosed before my acceptance into this school, I most likely wouldn’t have been accepted. In a way, I applaud my school for accepting me as an individual. I didn’t fall apart, or at least not while still there, so probably they met some of my needs to a reasonable degree.

I was autistic when going to blindness rehab and independence training. I was autistic when enrolling as a psychology major at the nearby college. Had I been diagnosed before my enrollment, I would most likely not be accepted regardless of my qualifying high school diploma. I was diagnosed while at this college and in independence training.

I was autistic and diagnosed with it when I enrolled as a linguistics major at university. I was autistic and diagnosed with it when I dropped out. I was autistic and diagnosed with it when I was admitted to the psychiatric unit, although this unit wouldn’t accept my diagnosis at first.

My parents believed that an autism diagnosis would limit my ability to become independent. It did. I believe that a lack of diagnosis would limit my ability to have a good quality of life. It did. And I for one believe that quality of life is more important than independence.

Some people believe that an autism diagnosis would enable a child’s or adult’s care team to cut the child or adult some slack with regard to their behavior. I believe that my parents and teachers in high school cut me more slack than my support staff at independence training or the college teachers did, and this is why I needed a diagnosis. They sought a diagnosis because they knew my behavior wasn’t normal. Accpeting my behavior as normal for me might’ve worked when I was a child, but in the real world, it doesn’t work.

I recetnly read an article in a magazine for parents of blind children about a mother whose child was suspected of having autism in addition to being blind. Eventually, the parents decided not to pursue a diagnosis, as they reasoned the child’s behavior was understandable given her character and blindness. My first reaction to this article was that I’d trade my diagnosis any day for true understanding of me as an individual. The thing is, the systmem doesn’t work that way.

Beyond Autism Acceptance

We often hear about autism acceptance, and I am all for it. Autism acceptance means accepting the autistic person in your life, whether it be yourself, your child, spouse or whoever, including their autistic differences. Autism acceptance does not mean not wanting to change anything about yourself or the autistic perosn in your life. After all, we all want to change and move towards teaching our full potential, and I remember from I believe it’s Eriksonian psychology that only a small percentage of people truly reach their full potential at the end of their lives.

Unfortunately, many parents of “low-functioning” autistic children say that they cannot accept their child’s autism because it’s rendering them incapable. I understand their point of view, but I do not see why there is nothing about their child’s autism that they can accept. As Suzanne over at Rarer in Girls says, she sometimes actually delights in her daughter’s autistic behaviors even though Janey is labeled “low-functioning”. At the same time, Suzanne wants Janey to learn functional communication and to become toilet trained. I totally see why.

I myself do my best to change certain aspects of my autism. For example, I watn to become less irritable and less easily overloaded. This is not because I don’t accept myself, or because I feel autism is bad. It is because I feel I could have a better quality of life if I learned strategies to regulate my sensory sensitivity and emotions.

I honestly believe that no person, autistic or not, has nothing they want to change about themselves, and for parents of all children, I don’t believe there’s nothing they want to change about their child. For this reason, I dislike the dichotomous perspective on which autistics need to be “fixed”. As Suzanne says, her child is “low-functioning”, but there are still aspects of her autism that she cherishes. In this respect, let’s move from which autistics need to be fixed on to which symptoms of autism need to be treated so that people can have a good quality of life.

There are other reasons I dislike the autism dichotomy. I am not allowed to complain about any of my difficulties, because I am more capalbe than some autistic children ever will be. These same parents are advocating for fulltime support for their children once they become adults, but I, being more capalbe in only a few areas, should deal without support. It’s that simple in the Netherlands. If you don’t require institutional support (which I do require, but people not working with me don’t get this), you fall under the local government in terms of funding for support, and care is no longer a right (which it is if you need institutional care).

Nothing in autism is dichotomous. It isn’t like, if a person crosses a certain, arbitrary line between “low-functioning” and “high-functioning”, they suddenly become completely acceptable and not in need of any treatment or become completely unacceptable and in need of a cure. There are people who can speak and write coherently who feel they’d want all their autistic symptoms to be cured. There are also (parents of) people who don’t have functional communication who don’t wish (their child) to be cured. That doesn’t mean these parents don’t want their child to learn. All parents want their child to learn and grow. As I said in my first paragraph, even neurotypicals often want to change. Change is inherent in a person’s process of aging, but that doesn’t mean that a person at any stage of their life isn’t acceptable.

Favorite Quotes #TuesdayTen

Today, Tuesday Ten is all about quotes. I love quotes. In this sense, I’m not lucky that most quotes today are shared as pictures on social media, although maybe I’m lucky not to get enough of them this way. I use quotes for jumpstarting my writing process sometimes. I also use quotes as part of my art journal pages, although I’ve not done one in a long while because I find it a nuisance to have to ask someone to print and cut out a quote for me.

art Joural Page

Today, I share ten of my favorite quotes, or more accurately, ten randomly assembled quotes I happened to come across and happen to like. I have attempted to make a good mixture between the inspirational and the funny.


  1. “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” – Helen Keller
  2. “You wouldn’t worry so much about what others think of you if you realized how seldom they do.” – Eleanor Roosevelt

  3. “Tact is the ability to tell someone to go to hell in such a way that they look forward to the trip.” – Winston Churchill

  4. “I love deadlines I love the whooshing noise they make as they go by.” – Douglas Adams

  5. “Reader, suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself.” – Mark Twain

  6. “Lock up your libraries if you like; but there is no gate, no lock, no bolt that you can set upon the freedom of my mind.” – Virginia Woolf

  7. “I decided early in graduate school that I needed to do something about my moods. It quickly came down to a choice between seeing a psychiatrist or buying a horse. Since almost everyone I knew was seeing a psychiatrist, and since I had an absolute belief that I should be able to handle my own problems, I naturally bought a horse.” – Kay Redfield Jamison

  8. “There is within each one of us a potential for goodness beyond our imagining; for giving which seeks no reward; for listening without judgment; for loving unconditionally.” – Elisabeth Kübler-Ross

  9. “Out of your vulnerabilities will come your strength.” – Sigmund Freud

  10. “The greatest need that any child has is the need for unconditional love” – Brenda Boyd


That last one isn’t famous (although I bet the Redfield Jamison one isn’t famous to anyone not involved in mental health either), but I got it out of Parenting a Teen or Young Adult with Asperger Syndrome (Autistic Spectrum Disorder by Brenda Boyd. The quote, she says, came from her original publication in 2003.

The Golden Spoons