I am a Patient & I have had an Experience

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My treatment is over now and I am running out of excuses for naps, begging off obligations and almond croissants.  I am achingly exhausted earlier and earlier every day and I have been told this fatigue will continue for several weeks. This cancer treatment is killing my social life.

As my oncologist says, two minutes of radiation is like spending the day in the hot sun, so I’m lurching around with a version of constant sunstroke.  My boob is super itchy which is an annoyance but not debilitating. I asked the Radiation Therapists, why do some people get burned and itchy and some do not and they did not know.  I have no idea what research is going on over at that fancy Research Building across the street, but apparently it is not research on side effects like itchy boobs.

I promised not to be complain because I did not need chemo and I did not need a mastectomy and for those reasons I am lucky.  Or rather, I am a lucky unlucky person because I still have breast cancer and being diagnosed with cancer has really messed me up, mostly in my mind.  I hope this blog isn’t negative.  I hope I don’t sound like a victim. I’m just trying to be a real person.  My experience having breast cancer has been surprisingly complicated and not all pink ribbons and teddy bears.  It has shaken me to my core.

Two weeks ago, I had a voice mail message from a manager at the cancer agency.  Apparently someone had forwarded my blog and told him to call me to talk about my ‘experience.’  I arranged to meet with him and Mike and I showed up to his windowless office before one of my daily radiation treatments.

He was a pleasant fellow, new to his job.  It was clear I had been labeled a ‘complaint,’ when in fact I had not contacted them with a complaint at all.  I was only writing about my own personal experience for my own blog.  True, my blog is public, but it feels creepy that my blog is being monitored in this way.  I felt reported.  We chatted about the patient experience in general and I emphasized that I hadn’t complained, but that I did have some ideas for improvement.  He wrote down a few things and that was that.

Later, I asked the people who had forwarded my blog for an in-person meeting with them and suggested that maybe they could have asked me if I wanted to have a manager  contact me.  I would have liked some choice in the matter, as opposed to someone assuming I wanted a call.  I got the ultimate brush-off message back and my request for a meeting was totally ignored.

Feeling discouraged, I then followed up, sending on a couple of general videos about patient experience (this and this), asking to meet with the administrator in charge of Patient Experience.  I am a Patient and I have had an Experience after all.  I sent that email ten days ago and have not heard back. I can take a hint.

It has always puzzled me why patients with feedback are silenced and pushed away.  Don’t professionals learn through challenging situations?  Aren’t ‘complaints’ just constructive feedback that can be used to improve care and service?  Am I the most naïve person on earth?

With all this ignoring of my requests and emails, I’ve realized that I’ve been labeled as ‘difficult’ – maybe even ‘crazy’ or ‘hysterical’ (terms I’ve heard used by staff for families – usually mothers – at children’s hospitals).  This is humiliating.  As I told the manager, I want to help. Patients have good ideas and aren’t actually stupid.  But I do not have any credibility at this cancer place beyond being ‘only’ a patient.  To administrators, patients are a generic cluster of diagnoses, not real people with ideas or opinions.  We are all a bunch of nobodies.

It was silly, or maybe arrogant, for me to think they want my help.  When feedback from patients is solicited by hospitals, through tools like surveys and comment cards, it is okay.  But when patients approach them with feedback that is not overtly asked for, we are shut down, brushed aside, minimized, gotten rid of, seen as a problem that needs to be handled.  I see this now.  We are supposed to shut up and be grateful for care.  Me and my itchy boob will zip it for now and stop rabble-rousing with the organization (and please know that I am grateful for the care, and brought in nice chocolates for the Radiation Therapists to my last appointment) and move forward.

Maybe one day an authentic chance to give feedback will be offered to me.  I was given a patient satisfaction survey to fill out a few days ago, but it had only a tiny spot to write ‘one or two ideas for improvement.’  I dutifully scribbled in a couple of thoughts – about orientation and waiting rooms – but I actually have about 100 ideas for improvement, but there was no room for them on the page.  No matter.

Currently, I am sick of the whole health care system.  Now is the time for me to rest, begin healing and scratch around to find a little bit of peace in my heart.  There are books to read, walks to be taken, music to be listened to and, most important of all, people to love.  Thank you to all who have shown up for me.  xo.

just show up

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A young woman who is dear to my heart recently posted this to her Facebook page. Her dad sadly died earlier this week.

If you have something to offer, a meal to make, time to visit, just show up or give if you can. I can’t tell you what we need. We have no idea. So just show up.

This is the wisest thing I’ve ever read in relation to a loss or crisis.

Just show up, however you are.   That’s all you have to do. I am grateful to those who have continuously messaged me to see how I was, even if I responded only sporadically. Many of my old colleagues from the children’s hospital I used to work at have been exceptionally good to me: meeting me for coffee, checking up on me, sending me bits of inspiration. I’m lucky to know many mama bears who also have kids with disabilities – they understand that you are not guaranteed a pain-free life. They meet me for lunch & walks and send me funny gifs. I’m grateful to my adult daughter who phones and FaceTimes me regularly and texts me every single day. My eldest son sends me emails, always signed with love. My youngest son knows I need extra comfort – he pats me on the hand, carries the groceries and we watch cooking shows together in our pajamas.

My dear husband is my rock. He works two blocks away from the Cancer Agency and unfailingly meets up with me for coffee or a quick hug every day. Once he surprised me by coming to the waiting room and I was pleased to show his handsome self off to the other ladies. He always shows up for me, even though I know this cancer has hurt him deeply too.  This is in sickness and in health.

Just show up. I, too, have to show up. I have to show up to treatment – Monday to Friday for twenty days, without fail.  Each day I show up differently:

Day 1: I was furious and wounded
Days 2-5: I felt angry and crabby
Day 6: I walked in like a boss, strong and confident
Days 7 & 8: I was pained, terribly hurt and broken
Day 9: This was my worst day yet, rock bottom, sad and despairing
Day 10: I actually felt a glimmer of okay

How I show up affects my perception of my experience. On day 1, when I wrote Susan Gets Radiated, I was very low. On day 7, I observed the unfriendly radiation therapist – the one I referred to in my post – tie up another patient’s robe for him and pat him softly on the shoulder. I was not feeling angry that day, and I felt myself softening towards her. Yesterday I showed up in tears and admitted that I was having a rough day. She reassured me in her usual brisk way, but she also extended a tiny branch of kindness, commenting on the colour of my toenails. Less distracted by pain, I saw her in a better light now.

My subsequent Radiation Therapists have been gentler and friendlier. Last week I brought Aaron in and one young RT was exceptional in taking the time to explain everything that was happening in a way my boy could understand.

On better days, the bad part of the patient experience is still there (The price of parking! The blaring TV!), but I notice other things too: the housekeeping lady who chats with me in the elevator, the warm blanket, the tea cart that shows up in the waiting room, the way all the staff introduce themselves by name. I’ve figured out that people bring their dogs into work on Fridays. Finally I caught wind of someone playing the piano in the lobby.  My vision is not as blurred by fear as it was the first day.

I wish these tiny touches were more consistent, but I grab onto them when I can. I have a theory that the whole patient experience should be designed (with patients) around our worst possible day, which is often our first, most scared day.  Then these small comforts that directly contribute to healing are there all the time, every day, no matter what.  I strongly believe that hospitals should be healing environments.  Medicine can cure (sometimes) but it is always the love that heals.

Today was a better day.  Mike was back home after being away on a business trip and we carpooled to the hospital together, listening to CBC Radio in comfortable silence. I went for a walk before my appointment and struck up a conversation with a lady in the crosswalk about pedestrian safety after we were almost side-swiped by a truck (!). We continued walking together, chatting for a couple of blocks. I stumbled upon a food truck that served Taiwanese Lemon Tea. I was thirsty so I stopped to buy one and I asked a fellow customer who was holding her tiny newborn – oooh, how old is your baby?  For the first time, I noticed that there are actually hundreds of tiny white flowers blooming right in front of the Cancer Agency. The Vancouver skies were uncharacteristically blue and sunny today.

Inside the building, I didn’t have to wait to see the doctor – my name was called right away. My oncologist didn’t have his regular stool in the clinic room, so he hopped up on the treatment bed and I sat on the chair sipping my lemon tea and we talked about his philosophy on why people get cancer. (Rogue cells mostly, he concluded).

Later, when I was lying in the stark radiation room, Abba’s Dancing Queen played on the speakers. Some days I can’t hear any music at all, but today I did, loud and clear. I closed my eyes during treatment as I always do and realized that for the first time in many months, I actually felt okay. This feeling might not stick around until Monday, but I’m gonna take okay and run with it for this sunny weekend. Ten treatments down, ten more to go.

you are enough

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Here’s Aaron, age 13, holding our sign at the Women’s March in Vancouver yesterday.  He is no stranger to protests – his dad took him to an anti-pipeline protest a couple of months ago.  We pretty much bring him with us wherever we go.

How do you explain to someone with Down syndrome about what a protest is?  We’ve been talking about injustices in the world with him for a very long time.  We show him articles in the paper.  He helps us collect petitions for campaigns.  We watched the US Presidential debates.  We sit on our bed and giggle at Saturday Night Live’s monologues.  In November, we had to explain our neighbour’s election results to him.  We talked politics with his older brother when he was in town last week from America.  (His brother’s short summary:  we are screwed).

Don’t think that Aaron doesn’t understand, or that we are confusing him.  He totally understands.  Last year during Canada’s election campaign, he turned to us and asked, “Why doesn’t Stephen Harper like brown people?”  Then, at a youth workshop for people with disabilities, in response to a talk about consent, he put his hand up and said, “Donald Trump didn’t have consent!”  No he didn’t my boy.

We had to explain the ‘F’ words on signs at yesterday’s march.  Also, that pussy word, which strikes me as being taken back by its rightful owners – women – as it should be. I told him it was another word for ladies, but only ladies can use it.

At the march, which was more like a slow walk,  we rounded the corner at West Georgia, and the crowd stopped in their tracks in front of the gleaming Trump Tower.  I had only driven past it before, and had never seen it up close. There were security guards standing in the windows, laughing at us.  A hush grew over the protesters.  Then someone raised their hand in the silence and extended their middle finger.  Then someone else did.  Young people, grandmas, everybody…fingers shot up in the air.

Aaron stood there, his eyes huge.  He knows what the middle finger means.  I leaned down to him, “do you want to give the middle finger to Trump?” “CAN I?” he said, not believing his luck – to be given permission for something so forbidden.  “Yes, but only for Trump – do you promise?   Nothing else.” I said.  He nodded and raised his short arm, his finger extended.  The lesson here?  There are times in life you have to say fuck you.  But save that fuck you only for special occasions.

People were at the march for all their own reasons:  to represent people who have been awfully and horribly marginalized, to protest climate change, to support love, to rev their feminist engines.  There were a lot of white liberal people – ourselves included – who have been woken up.  We were there for two reasons – to represent women who are caregivers who are invisible and uncounted.  And for our boy – he who belongs to a community that is systematically marginalized, ignored and discriminated against by real-life people and our own federal and provincial bureaucrats. IN CANADA.  Discrimination against people with differences is not just an American issue – let’s not be too smug about this in Canada.  I will continue to not shut up about this.

For some of us, it is easy to show up at a protest (never forget that for other people it is not so easy).  These people march and protest every day at their keyboards, at appointments, at kitchen tables.  But a march only heightens awareness – it does not actually create change.  That’s where the hard work comes in.  Be vigilant.  Speak up in the way that you can.  Organize.  Call out injustices.  Dare to be visible. To paraphrase our sparkly protest sign which paraphrases Brene Brown, Aaron is enough and you are enough too.

You take your kid with Down syndrome to a protest for this reason – to show him that he has a voice and that it is his job to stand up and use it.  Are we pushing him to be a self-advocate?  Perhaps.  But if Aaron ignores the evil in this world it will be at his own peril.

what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.

so much lemonade

See, when it starts to fall apart
Man, it really falls apart.
-The Tragically Hip

Today I’m digging around for all the books that give me comfort my time of need:  Anne Lamott’s Travelling Mercies, Elizabeth Lesser’s Broken Open.  I ate some carbs.  I went for a crunching walk on this sunny fall day.  This helped too.

I’m recovering from yesterday’s crying hangover.  This morning I painstakingly typed out a letter of resignation from my paid work position, after a particularly hard meeting with my boss.  I even watched this deodorant commercial for inspiration, but it didn’t help me one bit.

I’m moving back exclusively into the freelance-consulting world.  In hockey terms, I’ll be a free agent as of November 4.  There was a slippery slope starting with my husband leaving his working-from-home position last March for a ‘must show up in person’ one, and my subsequent leave of absence this summer.  This led to the difficult decision that I need to transition back to working from home to be a support for our youngest son, who happens to have a disability and who happens to be 13, too old for childcare, not able to get special needs childcare funding, not able to be left alone, in a school district that has significantly shortened teaching hours for kids with disabilities (pick up at 2:30 pm because they don’t have funding for Educational Assistants?  REALLY CHRISTIE CLARK?).  Well, I’ve ranted about all this crap before.  My boy needs me and that’s enough.

In my resignation letter, I added this punch:

The reason for my resignation is that I require that my work be flexible and based from home to support my youngest son. This is directly due to the lack of family support that exists in British Columbia for parents of children with disabilities.

This made me feel marginally better, although I know that nobody cares. It really bothers me that my choice to be in the paid workforce has been taken from me.  However, this also makes me acutely aware of my own privilege. I am in a relationship where my partner makes a decent income, so I have the option to move back into freelancing.  What of people who don’t have this luxury?  This is how the government forces people who have disabilities or those who are caring for people with disabilities into poverty.  How is this ok?  This is not ok.  What am I going to do about it?  I don’t know.  I guess I will have some time on my hands to figure that out.

But for a while, I am going to hang up my supermom cape.  Someone else can take over changing the world because that turned out to be rather short-lived this time around. I still hang tightly onto the belief that we will change the health care world only through love and compassion.

I’m working on a long-awaited book project.  I’m slowly getting more known in BC health conference circles, and have a number of scheduled speaking engagements.  I might eat more sushi and take more baths.  Importantly, I’ll pick my boy up from school, and we will stop at Tim’s by the high school for iced caps, where the ladies remember his order.  He’ll talk to me about his day as we zoom back home up the mountain before he catches himself chatting with his mother and announces to himself:  SILENCE AARON.  We will catch up on Born This Way episodes on PVR and eat popcorn in bed while we wait for his dad to return from his work. We’ll putter around in the kitchen, listening to soul music and preparing supper, where he has been crowned my capable sous chef.

The system has thrown a number of hard, rotten lemons at my head and I’m bruised and worn. But from that, I’m trying to make some pretty sweet lemonade.  I believe with all my heart that our best revenge for daring to have a kid with a disability is to orchestrate a happy, well-lived life – systems and society and governments be damned.  Love to all the families out there struggling to gain the same balance.  Know that you are not alone.

you must go on

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Today I left my son’s doctor’s appointment under the crushing weight of disappointment.  This was a follow up appointment to discuss a number of referrals for Aaron.  Here are the various statuses:

  1. On a wait list for an indeterminable amount of time.
  2. Another referral is ‘being reviewed’ – he isn’t even on the wait list yet.  (A pre-wait list?). Once he hits the list (if ever), the wait list is many months long.
  3. One service is $190/hour.  Another is $100/hour.  Yet another is $85/hour.
  4. The recommendations from the health care professional report won’t be funded by the school.
  5. We can’t get him into a publicly funded service because the ministry won’t open a file for us.
  6. Our doctor recommended we take the private, expensive options because the public system is of such low quality.

I slunk out of that appointment, my head hung low, my heart heavy.  Aaron was excited about a promised Dairy Queen lunch, so I stood taller, put a smile on my face and did my best to be a good mom.

I’m feeling raw and uncensored.  In response to this Maclean’s article (sure enough, alluding to the ‘risk’ of Down syndrome, a chromosomal ‘abnormality’), I tweeted:  Stop saying this shit.  I’ve been revisiting Aaron’s experience with inclusion (or lack thereof) when we were interviewed for this Globe and Mail article.  Frankly, those memories of Grade 1 bullies, dried up birthday party invites and general exclusion have been a real bummer.

The school informs me that his new special ed program doesn’t begin until mid-September, drop off time is 9 am (except for Wednesdays when it is 9:30 am) and pick up is 2:25 pm.   I’m not sure how I’m supposed to work – from 10 am to 1:45 pm?  I asked the teacher what other parents did before/after school (since our kids are over 12 and not eligible for daycare – not like we were eligible for that anyhow since the wait list for supported childcare is so long) and she told me:  well, most of the families have autism funding.  Well, sadly my kid has the wrong diagnosis for any sort of funding in this province.  Another fail.

NONE of this is Aaron’s fault.  We might blame the system, but the system is made up of people – living, breathing people – who make decisions that affect the real lives of families. I work inside that system.  This first hand experience makes me feel full of shame, for I am the system too.   I catch myself inching towards the mean and bitter mom category when I remember this:

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Oh right.  It is September 1.

After the doctor’s, Aaron hung out with a lovely young university student who was taking him to play basketball, so I went for sushi.  I went for a walk.  I sat in the library. We might not have respite funding, and we can hardly afford this, but dammit, I’m pulling out all of my self-care strategies and feel a bit better, surrounded by books and pounding out all my troubles into my keyboard.

If you are having a hard month too, my friends, you are not alone.  We must solider on, as Samuel Beckett says:

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In the quiet of the library, I remember last Saturday night.  Our next door neighbour invited me to a yoga class on her terrace under the setting sun. Afterwards she and her husband hosted a party, and Aaron and my husband wandered across the hall, bearing antipasto.  Aaron sat on the couch and patiently listened to the adult talk, for he was the only kid there.  One of our neighbours, new to Canada, said to him:  I have a present for you…and gave him a bear whistle.  Take this with you, she whispered.  If you see a bear, or if anybody is a bully to you, blow it loud.  Aaron nodded, cared for by this sweet sentiment.

Later, Nina Simone played on the stereo.  Our hosts got up to dance, their arms comfortably entwined around each other after 40 years of marriage.  Aaron watched them carefully, and then another neighbour asked him to dance, and then another.  He accepted, shyly.  I’ll never forget how pleased he looked, dancing with the ladies in that little living room.  This memory is like magic.  If I close my eyes and remember, it erases all the wait lists, our depleting money, the lack of access …it is all gone.  It is only my youngest boy slowly dancing with a kind lady, a slow smile spreading across his face, knowing full in his heart that he belongs, right here and right now.  He’s conquered the world with his very being, and we are both at once at peace.

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Genetic Discrimination is a Real Thing

I have taken a few days to reflect on this column that was published in the Globe and Mail on Tuesday, called Genetic Testing Bill Perpetuates Myths and Fears.

I’m still scratching my head over this piece’s single-minded approach. There’s no perspective offered from the community that is affected by genetic testing, only this sarcastic comment:

As Timothy Caulfield, the research director at the Health Law Institute at the University of Alberta, notes, there have been a lot of apocalyptic predictions about the evils of genetics: The decoding of the human genome (in 2003) has led to fears about designer babies, armies of clones and pervasive discrimination that creates a genetic underclass.

It is here that I must loudly protest.  My son has a genetic syndrome.  He and others in his community have experienced discrimination their entire lives, beginning with the health system where some physicians butcher the disclosure of a prenatal diagnosis to women, moving to societal discrimination directed towards my child with a genetic difference, manifested in the simple drying up of birthday party invitations and the more serious bullying in school settings.

I realize this column is about employers and insurers utilizing genetic information for discrimination.  So let’s move away from the real life examples of discrimination into the policy realm, shall we?  In our lived experience, here is where the discrimination resides:

Health care policy
Health services administered by our publicly funded health system vary wildly province to province depending on your genetic diagnosis. In my son’s case, he’s not ‘disabled enough’ to access publicly funded respite, home care programs, speech, physical therapy or occupational therapy services.  If you are fortunate enough to have money, you can only access these health services through the private system by paying out of pocket for services for your child.  It is here that the policy interpretation of the Canada Health Act fails our children.  Plus, we have stupid policies about IQ testing used to prove health care need.  That’s not discriminatory, is it?  Or is it?

Education
Well, if you want your kid with a genetic difference to learn, you’d better be willing and able to cough up the funds for private classes (or private school) because while the inclusive policies in our public education system are written to sound fantastic, there seems to be no measurement informing us how those policies are executed in the classrooms.   Again, here is an example of inconsistent application of policy in real life.  The school can’t teach our son to read, so the last batch of private programs cost us $960 for 12 sessions.  But that’s ok, right?

Social Services
Are you a parent of a child with a genetic difference and needs to or wants to work?  In British Columbia, that’s too bad!  Policy for supported childcare spots dictates that you require extra funding for your child to access childcare, and that funding is limited and also entails a waiting list that is years long!  After age 13, there is no childcare at all because everybody knows that a kid who is 13 can stay home by themselves, right?  Oh wait, maybe that’s not true if you have a kid with a genetic difference.  Oh well, too bad for you.

Families get pushed deeper and deeper into poverty because our childcare policies are not inclusive of those kids who need extra support.  Plus, adults with genetic differences are denied a livable income by our governments and my own provincial government is even so petty to take away people’s funding for bus passes.  But surely this isn’t ‘pervasive discrimination’ is it?

But Professor Caulfield tells us otherwise:

“There is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn’t happen on a scale that would classify it as a pressing policy dilemma,” (says) Prof. Caulfield. 

Maybe it isn’t a ‘big problem’ or a ‘pressing policy dilemma’ because people experiencing genetic discrimination are too preoccupied to speak up because they are trying to survive in the harsh landscape left in the aftermath of Canadian health care, education and social services policies. Maybe the voices of people who have genetic differences are lost in the sea of experts, who can grab a microphone more readily than someone with an intellectual disability or a speech impairment.

I’m just a mom with a BA in English, so let’s conclude with the words of Atul Gawande, who is a Rhodes Scholar and has his M.D. from Harvard Medical School:

The mistake, then, is to believe that the educational credentials you get today give you any special authority on truth.

Is there such thing as genetic discrimination?  May I respectfully suggest that instead of making broad-sweeping statements that genetic discrimination is not a big problem, you go to the source of truth:  the people themselves.   Because policy analysis is meaningless without combining it with the lived experience of real people.