just the way you are

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The older my son gets, the less I am interested in fixing him.  This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome.  Our family now lives in a bubble that we’ve carefully created around us.  We surround ourselves with people who believe in him.  We purposely chose his high school where educators believe he can learn and grow.  If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives.  We have lost many people. Our world has shrunk to the size of those who accept my son as he is.

It was not always this way. When my son was younger, I dragged him to many therapies and interventions.  I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children.  I was determined to have the best child with Down syndrome ever!  I also wonder if part of my need to change my son had to do with my own discomfort with his disability.  What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome.  If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?

When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted. 
I finally realized that the only thing I could change is myself.
-Unknown author

This week I was at a CHILD-BRIGHT Annual Meeting in Montreal.  I stepped out of my bubble into the real world of academics, clinicians and researchers.  I realized how soft and warm my self-selected bubble is.  Not everybody feels that people with disabilities are fine just the way they are.

CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability.   Most of the research is conducted within a medical model.  I wrote down snippets of the language used by the researchers:

‘Quality of life’  ‘Deficits’  ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’

I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children.  I do appreciate their dedication to their work.  But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead.  What my son really needs is a less-hostile world.  He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility.  But we are tired, so terribly tired, and we need help).

I’m not diminishing the importance of research.  But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.

intelligent lives

The year after our baby boy was diagnosed with Down syndrome, colleagues at my husband’s workplace – a department at the Ministry of Health – were gathering donations in my son’s name for our local Down syndrome awareness walk.  Peggy, one of my husband’s co-workers, was asked if she’d like to donate.  She responded:

Why should I contribute to someone who contributes nothing to society?

Fifteen years later, that comment still stings me like a slap across my face.  As a new mom, I was naive as to how the world values – and does not value – people who have disabilities, including little babies like mine.  Peggy was my rude wake-up call.  (There is a tiny bit of irony that someone like Peggy worked for the Ministry of Health).

Peggy’s response begs these questions:  What determines a person’s worth?  Is it how much they contribute to the economy? Is it how smart they are? Is it their IQ score?

Last night, the documentary Intelligent Lives was screened by UBC’s Centre for Inclusion and Citizenship.  Dan Habib is a well known filmmaker and disability-rights advocate.  His youngest son Samuel  has cerebral palsy and was featured in his first documentary Including Samuel.  I watched this film almost ten years ago, when Aaron was five years old and it struck me then how much the inclusion of Samuel in the elementary setting benefited the other children in the class, not just Samuel.   Habib has a TEDx Talk on this same subject.  Research backs theory this up – for references, see my post What Inclusion Means to Us.

There are many people like Peggy in the world who feel that disabled people like my son are a burden.  Intelligent Lives challenges this ableist view in two ways – first by following the stories of three young adults with intellectual disabilities as they travel through their lives searching for belonging.  Micah, Naieer and Naomie’s stories are human stories, as they figure out their own identities along the way.  Woven in with their tales is actor Chris Cooper’s steady narration explaining the dark history of using IQ testing to determine potential.  As he says, low IQ was a one-way admission ticket to an institution.

IQ testing and scores have been used in the past to set immigration policy, determine a soldier’s rank, institutionalize people with disabilities and to support eugenics, including those policies in Nazi Germany.  What is particularly chilling is that IQ testing and scores are still being used today, in 2018, by our governments to determine need and ability.

I’ve been railing against IQ testing for people with intellectual disabilities for a long time.  In the Province of British Columbia, a child with Down syndrome cannot access respite funding or therapies or programs run by disability support agencies unless the families prove their child has an intellectual disability.  This is done through psycho-educational testing, which includes an IQ test.  Wait lists for this publicly-funded testing run from months to years or you can pay $3,000 out of your own pocket to have the test done by a private psychologist.

I have to prove to the government that my son with Down syndrome has an intellectual disability.  If he tests too high – over 70 – he will be turned down for services, even if he ends up with a score of 71.

Habib’s film strongly attests that IQ tests meaningless – and even worse – that IQ testing is racist and ableist.  The tests are not adapted or modified when they are administered to children with intellectual disabilities, which means my son takes a test where he is set up only to fail.  To me, IQ testing treads on my son’s dignity as a human being and is a stupid way to prove he needs therapies and that our family needs support.

IQ scores serve only to put people in boxes.  Intelligent Lives points out that people have multiple intelligences that we need to broaden our understanding of what intelligence actually is.

The deeper question for me is why do we have to prove that people with intellectual disabilities have value and worth in the first place?

If I could travel back in time, I’d march right over to Peggy’s cubicle and tell her this: Having an advanced education or a fancy job or even a high IQ does not make you a better person than my son.

My son has value because he is a human being and that’s simply enough.

 

 

 

The Wonder

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My kids: Ella, Isaac + brand new Aaron, 2003.

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018.  It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings.   You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

 I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

advocate me

sue patient

This post is a follow up from my interview with Donna Thomson for The Caregivers’ Living Room and was written for + originally published on the Cancer Knowledge Network.

I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.

Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.

To paraphrase Guy Kawasaki, a magnificent cause can overcome a prickly personality, but why make things harder? I got to know my son’s clinicians and recognized the value of chitchat, being nice, giving thank you cards and remembering people’s birthdays.

I’ve been to protests and marches to call for fair government funding for people with disabilities. I’ve spoken to the media about policies that segregate my kid. I lobbied a children’s hospital to start up a medical Down syndrome clinic and then fought hard when an administrator tried to shut it down a few years later. I have a fierce reputation as a strong advocate and I would take a bullet for any of my children.

Last year my advocacy efforts came to a screeching halt when I was diagnosed with breast cancer. Many people said watch out cancer world, strong advocate Sue Robins is here – but all that bravado did not come to pass. I’ve often failed miserably at advocating for myself as a cancer patient. Newly diagnosed, I was meek, prickly and vulnerable. Intellectually, I knew what to do to speak up for myself in stark oncology clinics, but emotionally I sat as still as a little mouse, hunched over, compliant and broken.

It had been easier to advocate for my son. He was one step removed from me, and I could hide behind my role of the strong Mama Bear. Cancer is exceedingly personal and not one step removed at all, for my own cells have turned rogue on me. Breast cancer is an especially intimate sort of cancer – my breast tumour was an affront to my feminine body.

Sitting in exam rooms in thin gowns, exposing my breasts to strange hands and painful machines, I couldn’t figure out a way to salvage my dignity, never mind advocate for myself. I was stripped bare, as small as a little girl. Be brave and strong, they said. I was scared and weak instead.

People who knew me from the disability world told me to buck up, to advocate for myself as I had for my son. This call to action was not what I needed; it only served to pile guilt at my own helplessness on top of me. I simply craved compassion instead.

I slowly turned to writing to process my cancer patient experiences using both a personal journal and my blog. Even if I was unable to speak up during an appointment, I could write about it afterwards. On my blog, this caused me some trouble.

Cancer hospitals don’t like accounts of experiences, even anonymous ones, unless they are positive. Many of my own touches with health care were traumatic and a number of encounters were even unkind. I asked their patient engagement person if there was a way to share my photos I had taken during radiation and she told me they don’t ‘privilege’ one patient’s story over another. Then she added that the writing on my blog was raw. More injured, I left the public eye and turned inward.

This took funny turns – I signed up for a poetry workshop class and wrote about cancer in poetry. This was freeing – I could fictionalize my experiences and not be worried about being factual. A friend kindly showed me how to make a collage from my radiation photos that the cancer hospital wasn’t interested in. Art was a different way to speak up for myself. I was advocating, but coming at it sideways, not in a clinic room.

I poked my head back into published writing. A leader in radiation therapy asked me to co-author a journal article about my experience having radiation. A nursing professor asked me to write a guest editorial for her journal about suffering. I am hopeful my story leaves remnants for clinicians to pause to consider how patients feel when they are in their care. While this might not help me, this may help others behind me in the cancer world. Making meaning from my experience helps me heal too.

There are many ways to speak up for ourselves. Some people fundraise, lobby governments, give direct feedback to clinicians, and bring along support people to appointments to help given themselves a voice. Other folks just hang in there, endure and try to forget about the whole damn thing. That’s okay too.

Just as there’s not one right way to do cancer, there’s not one right way to advocate. The most important thing is to be kind and forgiving of yourself as you find your own way.

the gerber baby

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This is a slide from one of my presentations to health professionals explaining the reality of having a child with a disability.  This is a picture of a Gerber Baby, a so-called blue ribbon, or perfect baby.

This week, the Internet is abuzz that the new Gerber Baby has Down syndrome.

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Gerber Baby Lucas Warren

I’m obviously going to have to rethink my presentation slide.  My point was that we all expect a perfect baby when our children are born.  The honest fact is that no child is perfect, but with most children, this is something we gradually figure out as the years pass – particularly when adolescence hits and we get the inevitable call from the principal’s office.  Our job as parents is to help our children embrace their imperfections, for that’s what makes them – and all of us – human.

If you have a child with Down syndrome, the fact your child isn’t perfect is immediately pointed out by many people upon diagnosis.  I am happy for Lucas’ family and I know that having a baby with Down syndrome represent the Gerber Baby is a big deal for new families.  I’ve seen lots of sharing of Lucas’ image on social media and indeed, this news should be celebrated.  It is great that children with differences are starting to get a shot at modelling.  I pause here to say how I wish we were more evolved as a society and this wasn’t big news at all; that the advertising world chose images that represented the diversity of our world – including diversity of ability.  But that’s me with my rose-coloured glasses on.

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Aaron is the dude in the middle

When my son Aaron was three, he was chosen to be on a campaign to advertise a Buddy Walk, an annual fundraiser for organizations who support people with Down syndrome.  We were thrilled to see his image on the sides of buses and up on billboards.

I understand how validating this Gerber Baby news is for us families who are anxious about the reception our children will be received in the world.  Lucas will be a role model for families with young children, no doubt.  We search for role models for now-14 year old Aaron, too – in television shows with stars with Down syndrome like Born this Way or through plays like King Arthur’s Night, co-written and starring Niall McNeil, who has an extra chromosome like my boy.  Aaron needs to see other people with Down syndrome in the public eye to show him what’s possible.  It affirms his very existence.

Having Lucas as the Gerber Baby will bring awareness to babies with Down syndrome. But will this mean the world will start to change to embrace disabilities?

“I’m skeptical this is a significant moment,” said David Perry on CBC’s The Current this morning.  I feel jaded saying this, but I agree with David.  We have to go further.  Awareness is not even a start to anywhere significant.  Awareness is just awareness.  We can’t pat ourselves on the back for being so progressive that Lucas’ modelling gig represents great change in a world that continuously and repeatedly discriminates against people with all sorts of disabilities.  That would naive and foolish.

I’ve written before about The Cute Thing.  Lucas is super cute, as was Aaron during his brief modelling career.  Aaron grew up and Lucas will grow up, too. We all grow up.  Teenagers and adults are not cute, whether they have Down syndrome or not.  Are those who are not cute – for whatever reason – simply discarded, if cute is all important?  Is it only those people with disabilities who make us feel better about ourselves (a disturbing phenomenon called Inspiration Porn, as explained by the late great Stella Young) the only people of value?

I don’t know the Gerber Product Company’s intentions by choosing a baby with Down syndrome to be their Gerber Baby.  I’d hanker a guess that it is for the same reason they choose any baby:  an attractive baby helps them sell products. The baby food business is big business.  I note that Gerber was sold to Nestle in 2007.  I’ve boycotted Nestle products since the mid-1990’s, ever since I found out about their unethical marketing of infant formula – allegations of which continue today.

I do so wish this news was associated with a more ethical company.

What I’m asking for is for us to consider: Is that all there is?  When a large corporation chooses a baby with Down syndrome to represent their product, does this mean that my son’s own life is going to improve?  Will he now have friends?  Will I have funding for therapies, respite or childcare for him now? Will he be able to find a job?  Love? Will he be safe as he makes his way in this world?  These are deeper questions that bubble up for me.

As I said about cancer, awareness is simply not enough.  It is a feel-good road to nowhere, unless it is followed up by real action:  a change in practice about how prenatal screening and testing is offered to women, a commitment to inclusive education + employment opportunities, equitable health care and governments who demonstrate they value all sorts of diversity.  For sure, let’s pause to celebrate the new Gerber Baby. Then let’s roll up our sleeves and get to work.

cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.

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.