Breaking Up With Doctor Normal

“The ‘problem’ is not the person with disabilities. The problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.”  Lennard J. Davis.

Let me state up front, Doctor Normal is a fine man. On first meeting Doctor Normal, who seemed amiable enough, if intense, we decided we liked him. Doctor Normal was thorough. Doctor Normal took his time. Doctor Normal followed through with requests. Doctor Normal made us feel like, in the realm of his doctoring specialty, he knew what he was talking about.

But then one day Doctor Normal used the word “normal.” Something like, Well, in a normal situation… he started, and proceeded to describe the way of most children’s bowel movements.

The therapists and healthcare workers we’ve encountered usually forego the word “normal,” since it’s laden with value judgments about how a person should be, and is opposed to “abnormal,” which implies weird, strange, bad. But Meh, I thought. Whatever. I dismissed his use of “normal,” thinking, Maybe Doc just slipped. Possibly Doctor Normal needed a little schooling on language, ableism, and disability. More likely, Doctor Normal has spent too much time in the medical paradigm that makes love to bell curves and other measurements of “normal.” For more on this matter, I highly recommend Lennard J. Davis’s “Constructing Normalcy,” but here’s a gist: You might think that “normal” is a concept cultures have always valued, but it “entered European languages fairly late in human history.” Prior to 1840, the word “normal” was a carpentry term meaning “perpendicular.” “With the concept of the norm,” Davis writes, “comes the concept of deviations or extremes. When we think of bodies, in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants.”

To the tune of First comes love, then comes marriage, it goes something like this: First comes normal, then comes abnormal, then comes an ER doctor asking, They didn’t catch it in time? after you explain your child’s genetic condition.

But Doctor Normal didn’t say anything nearly so offensive. So on this day, I just shrugged. Could I really expect a doctor to be so word-careful? Could I even expect him to be a disability advocate? I decided that I could not, and I collected my two children, who might have both been screaming and/or hungry and/or tired by this point.

Then, at another appointment, Doctor Normal looked at the sizes of my two children in the office (the oldest is two pounds lighter than the youngest) and asked me, without any pretense or awareness, How is it, having a normal child?

In the ideal world, I would have spoken up that instant. Dear Doctor, let me set your language straight. Normal is a setting on washing machine.

But here’s the thing, Dear Reader. Fiona sees nine different doctors, five therapists, and a nutritionist. Each time Fiona visits a new health care professional, I must educate. I tell Doctor X and Y and Z about Fiona’s chromosomes, about her heart, about her vertebrae, about her kidneys, about her seizures, about her weight gain, about her caloric consumption, about her past tests, about the results of those past tests, about her therapies, about her progress with those therapies, about her interests, about how those interests relate to her chromosomes, about children with chromosomes similar to hers, about issues we may see down the line, based on the experience of these children. I do all this in good spirits, energetically rattling off the list of things docs might want to know, often while dancing. Yes, I’m busting moves. I’m doing little happy jigs in the office room because this child or that child needs movement, and I’m doing this—the dancing—while saying things like, Yes, febrile seizures lasting 3 to 7 minutes [Insert upbeat side-step.] Yes, Pulmonary Valve Stenosis and Atrial Septum Defect [a.k.a., a hole in her heart) [Insert right turn, left turn.]

I’m the expert on Fiona. I understand this. And so I must educate doctors on my daughter. But, given not only the list above but the stress brought on by living that list, I don’t think I have the energy to educate Doc Normal on issues of disability, advocacy, and ableism. I don’t feel like schooling Dr. Normal on the power of language and on healthier synonyms for “normal.” (We usually go with “typical” right now.  As a joke, I sometimes use “standard issue.” As in, Here is the standard issue car/child/steak dinner, and if you want a special car/child/steak dinner, you have to upgrade. In this case, Fiona is an upgrade.)

I mean to say: I just ignored Doc Normal’s use of “normal” again and I said what is true: Yes, parenting Petra is wildly different from parenting Fiona. And I chalked the whole exchange up to either A.) my over-sensitivity to the word and/or B.) Doc Normal’s oblivious but well-meaning use of it.

But then, after some talk about what Fiona cannot do (always, always their emphasis on her cannots), Doc Normal said, “I mean, she is way, way behind.”

That is when I realized that the doc’s use of “normal” wasn’t just a difference in our vocabulary usage. It reflected a different way of seeing.

Way, way behind, he said. I saw a race. Numbers on the backs and fronts of runners, all children. The able-bodied kids charging ahead, the whites of their brains all fatty and luxurious with myelin, sending and receiving impulses with standard issue speed. I saw them racing toward a finish line. I saw a ribbon fall when their chests touched it, and I saw arms raised in victory.

In the metaphor, my daughter is way, way behind. In the metaphor, my daughter is a turtle creeping along the asphalt, and no, there is no fabled “Tortoise and Hare” ending.

The metaphor makes a competition of human development, one in which my daughter is ultimately dismissed because, let’s face it, in this competition, she will never “catch up.” At a certain point, a marathon’s course shuts down. The tax dollars no longer keep it open. Traffic resumes. Night descends. The sky becomes black. The spectators and their applause go home.

There is no winning when this kind of language is applied to my daughter or anyone like her. The language highlights a way of thinking about the human body that measures the body by its output. Do, do, do. Go, go, go. No wonder new mothers sniff one another out on the playground, fretting about milestones, bragging if their kid rolls over a month earlier than books say. Fiona will not play along.

fi reading

As most kids her age crawl and then walk and then run ahead of her—all of which are, yes, worthy of celebration—Fiona is sitting in the same spot. Looking around her. Picking up objects and making games that only she completely understands. She halts the racing metaphors in their tracks. She mutes the bull-horn and its announcer. She sees the finishing line ribbon and looks upward instead, and purses her lips and sniffs into the unknown. She really likes to sniff.

sniffing

She does not exist in order to be a gift to us, and yet she is still a gift to us, and if we let her, this is what she teaches: fuck your races, friends.

Okay, I’m sorry. She’s not that crude. That is her mother speaking.

Forget your races, friends.

If her doctor doesn’t know this, if her doctor applies a value-structure to her care that will always demean her, I will choose another doctor.  He’s not gone forever, but when given the choice, I will choose someone else. Yes, it’s that important. It’s important that as many people as possible on Fiona’s team respect who she is, how she is, without pouting their lips at her body’s refusal to fit on the bell curve.

“We don’t know what her future holds,” I said to Doctor Normal, trying to give him another chance. I said it in an open, carefree fashion, as in, For my girl, we can throw the maps out the window, Doc. As in, There is a certain liberation in this, Doc. As in, Let’s fill the bell curve with candies, make it a bowl.

But Doc still didn’t get me, because instead of offering a nice exhale, admiring my daughter, and smiling at her mystery—which would, in some way, be a method of smiling at all of humanity’s mystery—he nodded sternly and said, “That’s exactly right. We don’t know what her IQ will be.”

I recoiled a little and realized Doc Normal and I would probably never be on the same page. Only later did I reread Lennard Davis on the subject, learn how the concept of normal led to the field of statistics, which bolstered eugenics and led to the bell curve, which led to the Intelligence Quotient, on which all our kids are charted. With the mention of an IQ test, Doc Normal brought Fiona and I back into Normal’s tyranny.

Today I read these notes from my friend, Steve Kuusisto, who is imagining a better future for people with disabilities. “Teaching with the motto: ‘presume competence.’ Neurodiversity seen as human potential.”

Neurodiversity seen as human potential. Yes! My daughter’s brain is different. Medical language underscores her deficits. Delayed myelination. A brain whose impulses aren’t as fast as mine or yours. But what of her potential? What of her differences as opportunities? Ones as beautiful and as glimmering as blinking stars in the night sky? Erase the race. Drop the ribbon. Look up, Doctor Normal and Doctors X and Y and Z. Look up.

fi looking up

26 thoughts on “Breaking Up With Doctor Normal

    • No, I haven’t, but I’ll add it to the list! Thank you. Since Fiona, I’ve attempted my own ad-hoc, crash course in disability studies, which feels incomplete and awkwardly self-driven, so I’m always looking for someone more schooled to say: you’ve gotta read *this.* Thanks again!

      • I am going to write a post about your post on Doctor Normal. This really resonated with me as I went through the medical mill for a decade and as a paralyzed man have an “abnormal” body. Physicians often fail to grasp why life can be like with an atypical body. We always fail when compared to normal.

  1. Thanks for that Heather. I have been physically disabled all my life and I wrote this. And this is the cycle that carries on if we listen to ANY Dr Normal or any Normal for that matter.

    “The Cycle of Negativity
    Most people with a congenital disability and many of those with an acquired disability (depending on the age they are when they become disabled) are caught in a “cycle of negativity”. For example, from the moment a person with a congenital disability is born, the general reaction to their disability and therefore to themselves is one of negativity. As babies, toddlers and children they will hear people saying things like “what a shame she is like that” or “it’s a pity she survived”. The medical profession will talk about them in front of them about their inability and their deformed bodies or minds. They will be paraded in their underwear and poked, prodded and operated upon. The medicos will be the “experts”, the ones who know how wrong these children are, and they will say so. Often opinions will be expressed as to the capacity of these children to “perform”. Doctors and physios will say “she will never walk, talk, read a book, laugh, respond to you, drive a car, get married, etc”. They will not be expected to achieve anything, they will be teased by other children, stared at in public and avoided by other people. This is the cycle of negativity.
    This negativity seeps through to the child’s core and leads to them having a very low opinion of themselves. They may see themselves only as useless and a burden.
    When a person with a disability fails to achieve because of discrimination, lack of opportunity or poverty no one will recognise that those are the reasons. They will see the failure as an innate part of the person and therefore not anyone else’s responsibility. The failure will confirm the earlier predictions by doctors or parents or friends. They will confirm their own rightness. But for the person with the disability the negativity goes on.
    This cycle does not ever stop. Even after a person with a disability dies people often say what a blessing it is that they are free. Those people never consider that they all had a hand in building the prison of Negativity.
    Glenda Lee © 1998 May be used with acknowledgement of author.”

    I have Spinal Muscular Atrophy which involves the myelin sheath on the nerves so when I read “Way, way behind, he said. I saw a race. Numbers on the backs and fronts of runners, all children. The able-bodied kids charging ahead, the whites of their brains all fatty and luxurious with myelin, sending and receiving impulses with standard issue speed. I saw them racing toward a finish line. I saw a ribbon fall when their chests touched it, and I saw arms raised in victory.”. I cried.

    my way way behind was always anticipated by everyone and me, my early death. But here I am 57 years of age. So FUCK OFF Dr Normal!!!

    the reason I can still fight the fight for my people after so long is due to you and your girl. You and others like you who know the wholeness and completeness and perfection of your child. You who will both walk away and stand and fight. I know that my work will continue. I am with you :)

  2. Fantastic post! As someone with a life-long difability, this argument is one I have been having for years, but you have put it into the best language possible. Thanks so much, and I would like your OK to post a few sentences and a link to this post on my blog, http://www.truthabouttalipes.wordpress.com I am also going to look up Leonard Davis, and thanks for that lead, as well.

  3. Thank you for this post, Heather. The older I become, the more that i fully realize that there is no “normal”. We ALL are unique in our humanity. “Unique” as in “one of a kind”. Our culture has a hard time with that concept.

  4. We ‘broke up’ with a doctor when he told me that if my son was normal, he would perform a surgery to bring down an undescended testicle. “Because in a ‘normal’ male, an undescended testicle would impair fertility, but you don’t want him to have kids anyway. ” I told him that I was not willing to make decisions regarding my son’s fertility when he was 4 yrs old, and that, besides that, fertility is impaired if the testicle is not repaired before the boy turns 1 (so kind of late for that anyway, doc) PLUS an undescended testicle usually has a hernia associated with it, wouldn’t that need to be fixed? PLUS an undescended testicle is at a higher risk for developing cancer later in life, so wouldn’t we want to have it down in the scrotum so it could be more easily checked…he poo poo’d that idea and said that the rate of testicular cancer is very low, so it wouldn’t matter. Then I told him that people with Down syndrome have very low rates of solid tumors…but the one that is highest in males with Ds testicular tumors…so wouldn’t it be better to have the testicle in the scrotum? ” He looked at me like I had 3 heads, then reversed his position and said that he would advise doing the surgery. But by then, I was done. No way was he going to touch my child.

  5. Hi Heather!
    I just found your blog through Salon (???) and I understand so much of what you write about. I am a mum of 3 in Ireland. My youngest also has a rare medical condition and her name is Fiona too. I am so happy about her two word utterance, that is a very exciting step and major indicator!!! Will follow you from now on.

  6. Thank you for writing this!!!!!!!!!
    I recently broke up with a NEUROLOGIST if you can believe it…
    That kept dismissing my need for “real answers”!!!!!!! “a clinical diagnosis is enough at this point, because there isn’t really much we can do for her.” kind of attitude. I pressed for testing which revealed his clinical diagnosis was wrong, and… he said the “way way delayed” line.

    My daughter had been seeing him since she is 6 mos. old!!!!!!!!!!!!! She cannot yet sit independently and is going to be 4! She cannot hold objects, she can’t use her arms in a purposeful manner! She can’t crawl, or walk or talk, and eats puree…
    You get the point! HE ASKED ME IF SHE WAS WALKING YET??????
    WHAT??????

    Do you know what patient is in your office??????
    Why don’t you start with sitting????????
    I think steam came out my ears.

    Then he asked How many words she had????????
    WHAT??????? She doesn’t babble yet!!!!!!!!!!!!!
    I swear to god!
    That’s when he inserted the “way way delayed” line!
    he was kicked to the curb after this. I didn’t flip out in his office except the tone in my voice as I made clear, to spite his opinion, my daughter deserved the best life possible and that it’s my job to ensure that! I was getting the testing, because the only way I can do what’s best is to have knowledge!
    Thankfully he ordered the tests I insisted on, and we are finding answers and have found great Dr’s because of it! There is a silver lining!

  7. Hi,
    I am moved by your words. I am also the parent of a child with a “disability”. My little guy has Autism. I can totally relate to the millions of therapist and doctors…it is mind numbing and endless. Always starting at the beginning with a new doctor and have to prove that you, as the parent of a special needs child, are smart enough to handle raising your child. I hate that part…the “proving” that I am the expert and that I don’t need to have autism explained to me.
    We gave up on normal so long ago and have not looked back. Seriously we have seen the worst that autism has to offer and come through to the other side. My little guy is a walking talking miracle. It took me a little time to learn that my son did not need a doctor he needed a team. Doctors and professionals that would partner with my husband and me to create a team to care for him. That was pivotal for my sanity and for my son’s success.
    I have no idea where you are located but look into your local university. They may have a LEND program. http://www.aucd.org/template/page.cfm?id=6. This should link you to the AUCD page. If not just google LEND. It is an awesome interdisciplinary program that takes various professionals, grad students, and a parent representative and puts them in a year long class together. It is pretty awesome. The reading/class material is great. The ability to work along side with these professionals as a parent can really change to landscape of care for our children.
    Anyway. Thank you for your words. I wish you and your beautiful babies the best. The one thing that I know for sure is that my little guy had defied and redefined all the odds and rules. I have been so blessed by him not being normal. I have a front row seat to a very slow, hard fought beautiful miracle. You do to! Just wait and see. It is going to be amazing.

  8. inspiring I have to share this with my educator colleagues as well. I also have an adult daughter who has a syndrome. You truly get at the heart of the matter. I want this to be shared with an organization called SWIFT. It is an organization which is helping schools transform and be much more inclusive and break down the “silos” of education… special education, regular education, title reading services. Even though this was written with the medical profession in mind, educators need to read this as well. Thank you so much!
    Dawn

  9. I could not have said anything better than this. My daughter has many issues as well and we have “fired” a few Doctor’s in the last 2.5 years and every time we do, folks are flabbergasted at my gumption, but it isn’t gumption. If someone isn’t on our team in every way, they are not welcome on our team. We only accept positive outlooks along with medical pedigree’s. Your daughters are very lucky to have such Warrior Parents.

  10. There are, sadly, doctors with ” book knowledge” that are unfeeling people with no clear understanding of what empathy means, now how to talk to people. Have had a couple of hurtful encounters with what I call heartless, thoughtless professional people. They should be neutered. The world does not need any more people like that.

    Mandoirene@aol.com

  11. I really only have one response to this – HELL YES!! Thank you!! I have been thinking about breaking up with a doctor or two and you gave me the silent justification that I had been searching for.

  12. Ugh THIS THIS THIS! Find a good doctor is such a struggle when you’re typical. When you’re an upgraded model it’s even harder.

    I love my rheumatologist (very much dislike one of his incompetent nurses but you can’t have everything). He LISTENS; he spends TIME with his patients. OK sometimes it’s a problem. He spends so much time that you go to his office with lunch and a good book and maybe some games because you’ll have a 2.5 hour+ wait for your appointment (or you go at 7:30am) but I am willing to do this because he is so awesome. He encourages therapies such as diet and exercise, and is open to acupuncture and will research things I’ve read about that he hasn’t heard of, but at the same time is perfectly willing to prescribe the medications I need. He BELIEVES me. I get so tired of being treated like liar, like a drug seeker, like an addict by medical professionals.

    PS I actually started this comment just to say how beautiful your daughter is. What a lovely, happy child!

  13. Awesome. “She does not exist in order to be a gift to us, and yet she is still a gift to us, and if we let her, this is what she teaches: fuck your races, friends.” – Loved that bit a lot. I know I’m adding only to say the same as others- but here goes…
    Good work on deciding to get rid of Dr. Normal, because although there are many like him in the world, there are also many other professionals who can and will be your allies. Once you find them, *HOLD ON FOR DEAR LIFE* and let go of all the rest. :)
    Keep truckin’ Momma.

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