Blog Post: We Will Get Through This

Ten days.  My family has been in quarantine for ten days.  That’s less time than many who began physical distancing at the start of the March break, and longer than the last stragglers making their way back into the country.  While my family is not struggling in the ways some are struggling, we each have our own internal battles, in the backs of our minds, taking hold.

I am an extrovert who NEEDS time to herself.  In the presence of others, I’m like a windup toy, bouncing off external energy, then slowly I begin to leak power until I come to a standstill.  The only way to wind me back up again is to give me peace and quiet.  Alone time.  Being around my family twenty-four seven is draining for an extroverted-introvert like me.  I’m constantly being wound up.  Too much touching, too many hands.

Being around my husband all-day long can be trying.  We often categorize children as taking most of our time and energy, and true-that, but adults demand more attention than you think.  The drain is more mental.  More than once, I’ve had to remind myself to be nice.  Like a caged animal I want to lash out, “Give me space, get away from me!”  And, I love you.  We face contradictory truths.  In our past life, pre-Covid, I would notice how quiet my evenings were when Dan travelled for work and wasn’t around.  I would miss our dinner banter then, and of course miss him when it was time to turn the lights out, but I got used to fending for myself and my kids.  Together time 24/7 takes a whole new level of getting used to.  Luckily, we have some practice under our belt.

This period of intense together time we are experiencing now is not unlike our experience traveling the world together; then, as now, we were confined to each other, but now we’re doing so at home instead of out in the world.  It’s a good thing we like each other.  Love is one thing, but those who don’t like their partners are likely facing additional hardships right now.

For the record, this trip atmosphere stinks compared to the last one.

Don’t get me wrong, I have moments, as many do, of feeling like this whole mess is great fun; I pretend like we are actually travelling the world again – my husband is around all day, we work through our days as a team and get to talk and play with our kids.  We take turns working from home.  Many families are for the first time enjoying endless hours of together time – and what could be bad about that?  If only these hours weren’t underlined by a global pandemic and mild panic that lies there, just below the surface.

Some days, I have fleeting thoughts of revolt and flight.  Case in point, what I really want to do when our quarantine time is up is go on a massive eight to ten-hour hike in the forest.  By myself.

We all must find ways to recharge our batteries.  Friends of ours who rarely fight had a ridiculous blow out the other day because one person just could not sit still.  As he is not in quarantine, he finally found a food bank where he could volunteer for a day just to get out of the house.

While my personal boundaries feel breached, stretched and distorted, I know others are dealing with concerns of a higher order:  with sickness, isolation, financial hardship, the loss of livelihood, anxiety and even death.  So my writer’s retreat had to be rescheduled.  So my Masters residency was moved from a week in Halifax to online (sigh, I’m still grieving that one), there are WAY WORSE THINGS.  I am not the person to trivialize another’s plight, be it a hangnail or a barely hanging on, but I’m comfortable speaking for myself in saying, “yes, Adelle, there are some things in your life that suck right now.  Sometimes it feels like each of the four other members of your family are breathing down your neck (because sometimes they literally are) and that they are climbing onto your shoulders and sitting on your head (that too), squishing your very soul (a bit of an exaggeration), but as long as you are healthy and together, you will get through this.”  Truly, I could not imagine spending quarantine with a better crew.

There’s a beautiful poem by Jack Gilbert called A Brief For The Defense about continuing to find delight in our world anyway, even, especially, in the face of hardship.  His words are apt in these times:

Sorrow everywhere.  Slaughter everywhere.  If babies/ are not starving someplace, they are starving somewhere else.  With flies in their nostrils, he begins.  Later comes my favourite lines:

We must risk delight.  We can do without pleasure,/  but not delight.  Not enjoyment.  We must have/ the stubbornness to accept our gladness in the ruthless furnace of this world.

And so I continue to train for my triathlon that might get cancelled anyway.  I have elastic resistance bands attached to my banister so that I can simulate swim training.  We adapt.  I will continue to mail out my book manuscript even though there are no publishers in the office to receive it.  I will take joy in the signs of spring outside my window and I will share that joy with my three children who bring me hope every single day.  We will celebrate – risk delighting – in the twittering robins, the first mosses, patches of grass, under grey skies and heavy rain.  I will not let one day go by where I bemoan my life, this great gift I have been given.  I will allow myself frustrations, true pain as it arises, but I will not deny myself delight.  We cannot allow ourselves paralysis indefinitely.  Or you can, if that’s what you need – you can – but why would you want to?  The world goes on.  Those who can go on, must.  We will get through this.

Not Coronavirus: What? Syndrome

Author’s Note: I wrote this as mounting tensions over Covid-19 were rising.  I don’t want to appear insensitive or unaware of the current pandemic situation, but when life goes on – and regular life will go on – there will be other things to discuss and what follows is part of a dialogue from a conversation I’d like to have.  Grab a chair and lend me your ear.

Why is it that certain service providers and businesses act like people with disabilities don’t exist?

If my daughter with Down syndrome wants to go to camp, and she needs some support to be there, whose responsibility is it to arrange and pay for that support?  Without getting into the legalities, who do you think should have to do this?  What feels right to you?

Written into the Ontario Human Rights Code under The Ontario Human Rights Commission:

“…service providers have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.  Accommodation is necessary to ensure that people with disabilities have equal opportunities, access and benefits.  Employment, housing, services and facilities should be designed inclusively and must be adapted to accommodate the needs of a person with a disability in a way that promotes integration and full participation.”

I am no legal expert, but when I read that, I think, ya, businesses are supposed to be designed in a way that anticipates the range of human existence.  The needs of people with Down syndrome should not be an afterthought.

I am no legal expert, and that is why I’m talking to a lawyer – who is – and will hopefully be able to give me a definitive answer to my camp question, regarding support, but I know what feels right and what doesn’t.  And being told I would have to pay for a support person to accompany my daughter to camp definitely doesn’t feel right; it feels like a slap to the face.  Like the person making the statement doesn’t know my daughter at all (because they don’t).  Like the person is making assumptions and generalizations without asking any questions (because they are).  Like society doesn’t care about inclusion.  Like inclusion is a myth.  There’s money I can access to pay for this support person, but then there will of course be less money for other more essential services, like speech therapy for example; but this is about more than money.  My question isn’t just about who pays.  The costs are much higher than that.

For a child with disabilities to be able to participate in a camp setting or community program, I view putting all of the onus on parents to provide that support as a lousy thing to do.  If you send your typical kid to rock climbing camp, you aren’t expected to bring your own ropes and harnesses, which is what it takes to be able to participate in rock climbing camp.  If we say we are an inclusive society, or if we truly want to be (which we should) then camps should hire extra staff to help meet the needs of kids with varying abilities.  The best part of this approach is that every camper would benefit, and this my friends, is called ‘Universal Design’.

When I approach a new program for Elyse, I want to know what the business is doing on their end to accommodate my child, but I am also sure to ask what can I do?  I don’t mind meeting halfway; I view any setting between a child and a care provider as a partnership, which means both sides have responsibilities.  My responsibility is to help that setting get to know my child; their responsibility is to do the rest.  Elyse does need some degree of support; but it’s all in the way an organization goes about offering it (or not).

Here’s a great example of a partnership that worked.  Before the start of summer gymnastics camp, we signed Elyse up for a regular gymnastics class session so that she knew the staff, and they knew her.  We then enrolled her in that same gymnastics club’s summer camp during a week that was less busy, because we had that flexibility, and in return, the club matched Elyse with a coach whose style and personality jived.  The club was flexible in making sure Elyse’s needs were met without impacting the group dynamics or causing undue harm or hardship.  She did not need a one-on-one support person, but what she did need was a mature coach and a group effort and consensus to keep an extra eye on her.  The coaches did this because they are doing their very best to uphold the values of inclusion and the principles that when we support our most vulnerable and we are a community that looks after each other, then everyone benefits because everyone belongs.

Likewise, our community swim program has been phenomenal.  Year after year, I contact them in regard to registration and mention that Elyse has Down syndrome.  I then discuss Elyse’s specific needs, because – hello – not all people with Down syndrome are the same!  I explain her needs, am flexibly on timing and then Halton Hills recreational staff make sure Elyse either has one-on-one or that there is a volunteer extra staff available to help her in a group setting should she need it.  This has been at no extra cost to us.  This inclusive set up makes us feel welcome and valued in our community.

But not every community program is so wonderful and not every camp knows Elyse and wants to help us out.  The consensus across Ontario is not always a ‘we’, but often still an ‘us vs. them’ mentality.  Friends of ours have mentioned they were turned away from daycares, for example, because their child has Down syndrome.  Why is this happening?  It shouldn’t be.

I now have the correct label for this phenomenon.  I wrote about discrimination in another recent blog post, but that’s not exactly what this is.  The proper term is ‘ableism’ and ‘ableist attitudes’.

From the Ontario Human Rights Commission (OHRC):

“Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.  Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.  It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities.”

This, all of this, yes.  Unfortunately, though steps have been taken to try and help bridge the gap, there exists a chasm between the abled and the disabled; the gaping hole that remains is in our attitudes towards those with disabilities.  Sure, throw some money at us – the families who have children with disabilities – we will take it, but it is outdated attitudes and stereotypes that are weighing on us heavily and truly holding our children back.

Expectations, and the expectations we hold for individuals, matter.  There is a slew of research on the impacts of our expectations in regard to outcome and performance, but what you need to know is this:  when we believe that someone can do better, they do better.  When we set our expectations high, individuals tend to perform better.  When we set people with Down syndrome and their families up for success, by putting supports in place that do not cause undue hardship to families rather than just worrying about businesses, then society wins.

Do I want to see a business collapse under the weight of supporting my child?  No.  But that is so far from the case, regardless.  Do I want to see a service, such as a camp, act surprised when I come knocking at their door with my child with Down syndrome?  1 in 800 Canadians are born with Down syndrome – why should anyone be surprised?

Again, from the OHRC:

“Ableist attitudes are often based on the view that disability is an “anomaly to normalcy,” rather than an inherent and expected variation in the human condition.”

People with Down syndrome have always existed.  In every race, gender, socio-economic status and across time.  For those who haven’t already, it is time for businesses and service providers to wake up and plan for the diversity of the children who will arrive at their doorsteps.  Do not put undue hardship on families.

Maybe this is all too impersonal.  Too preachy and utopian.  I don’t think so.  I know we can do better.

And here’s why we should.

Emily and I are giving a talk in a school.  The kids absolutely love her and want to be around her.  Emily is a former Special Olympian rhythmic gymnast with a sparkle in her bright blue eyes and a wit to match.  After our talk is over, a kindergarten class fills the gym and the teacher pulls out a parachute.  While I’m busy chatting, Emily, without missing a beat, joins in with the Kindergartens, shaking and lifting the parachute much to their delight.

On our drive home, I ask her why she did that – joined in at the parachute.

“Because,” she said, “I like to do that, and it’s been a while.”

How many adults do the things they really want to do when it comes to play?  I aspire to be that person, but I don’t always succeed.

There are so many lessons to learn in the breadth of humanity.  We need to be bringing more people in, hearing what they have to say, rather than keeping people out and turning them away.  I have learned more from the experience of having my daughter Elyse than from any education a higher institution could provide.  Some things – love, for example – cannot be measured or quantified or taught.  Some things are mostly felt and there are certainly those individuals more equipped to teach us.

When it comes to supporting each other, building inclusive communities, and the attitudes that pervade, businesses and service providers shouldn’t be worrying about whether they’ve done enough to meet the status quo or minimum standards (though they should make sure they have done at least that) – but whether they can do more.

You have to Go Slow to Go Fast

As the Chinese proverb goes: a journey of a thousand miles begins with a single step.  Having just finished listening to ultrarunner Scott Jurek’s second book, North, where he ran the entirety of the Appalachian trail for forty-six days straight, a total of over 2,000 miles – upwards of fifty-mile running days – these words ring true.  But it isn’t just Scott’s incredible trek that has got me thinking about how to achieve an end goal, it’s the life that’s playing its music, ringing out all around me.

I’m standing at our kitchen sink washing dishes.  In the next room over, Ariel is sitting at her piano bench practising a new song alongside her piano teacher.  When her teacher asks her to slow down, Ariel, unmoved, continues to play to her own beat.  This has been a repeating theme in the past weeks of her lessons.

“Slow down, Ariel.  You need to slow down.”  Her piano teacher is patient and kind, but firm when she needs to be.

“Why am I here, Ariel?”  The keys plunk to a stop.  Point taken.  Ariel attempts to slow down her pace as I commence chopping veggies for dinner.  I know all too well that slowing down isn’t easy.  We all want to get there.

“Do you know what the great masters do when they’re learning a new piece of music?” her piano teacher continues, “They practice it at an unbelievably slow tempo, like thirty beats per minute or something like that.”  To gain an appreciation for the intricacies and precision of the piece, great musicians take their time when learning, even though they can go faster, especially because they can go faster.  Those masters are on to something.  The musical term attributed to this tempo speed is ‘grave’, meaning slow and solemn.  There is a sense of reverence, of devotion, in the art of going slow; arguably, this is, or should be, the pattern of our daily lives.  We only have a finite number of days until the end, then as quickly as we arrived, it’s over.  Going slow is a metaphor for life.  We must each decide the music we want to make.

As the master pianist slows his tempo, the same is true in running, and arguably in any sport.  One of the hardest lessons I am still learning as a runner is you have to run slow to run fast.  And you have to run slow to enable your body to run far.  In ultrarunner Rich Roll’s book Finding Ultra, once he feels he has built up his level of fitness after a few years of mega races he begins working with a coach.  His base fitness level tests reveal a different story.

“Rich,” his coach chastises, “you’re going to have to slow down, way down.”  The numbers don’t lie, and Rich’s heartrate was skyrocketing.  By slowing his running pace to almost a walking speed, he was able to train and lower his heartrate that would later help him achieve incredible feats.

When Dan and I trained for our marathon, we didn’t train to a time.  What that means is, we didn’t try to run at a certain pace, we just ran.  This drove Dan CRAZY, but I was adamant that we run only listening to our body’s cues.  When we trained together on those long Sunday runs, we purposely kept the pace slow – slow enough to be able to talk to one another comfortably into the second hour of running.  It’s worth noting neither of us got any injuries.  Marathon training was a huge lesson in you have to go slow to go fast.  Slow was the four months of training.  Fast was race day.

Writing a book.  Completing my memoir was a painstakingly slow process.  Just when I’d think I was getting close to finishing the job, there was another person to contact or days and months worth of editing and revising to wrap my head around.  To give you a sense, at one point where I thought I was nearing completion, another whole year went by before the manuscript was actually completed.

Writing a book will break you.  There were times when I wanted to give up, several times.  At one point, I took almost two months off from writing my memoir.  And oh, the shame!  Whatever book you decide to write, you had better know in your heart of hearts that it’s the one that needs to be written by you, because when the going inevitably gets tough – and it will – you need something to hang on to.  For me, it was simple.  An image of my daughter would materialize in my head, and I could easily justify pushing on.  I could review that one more section for the fourth or fifth time.  I could question not just every sentence, but every word, every comma, every period.  Like I said, the process was – still is – slow, but I can’t give up now.  With my ultimate goal of traditional publishing, I’m in the midst of the going slow process.  The publishing industry is infamously sluggish, with wait times of up to a year to hear back.  But I’m not going to pin this all on them.  I have been humming to my own tune lately, pushing ahead with other projects instead of focusing on finding a publisher.  Why?  I’ve been distracted by other writing.  How easy it is to get swept up in the goings on of the world, of glittery projects and new ideas.  I am queen of big new ideas.  Just ask my husband how he found himself traveling around-the-world with three kids in tow.  And, because creating is more fun than hunting down a publisher!  There, I said it.

My book is written, the manuscript complete, but this baby needs a home, and then I’ll be able to get it out into the world.

The truth remains, you have to go slow to go fast.  I can’t skip ahead to the part where my finished book lay bound in my hand like a trophy.  Not without putting in the work, the monumental effort.  Not without putting one foot down in front of the other for what feels like a thousand miles.

I’m going to have to slow down, plunk away at those keys, keep the tempo steady, even.  The world isn’t going to care if my book never gets published, not really; so I have to care.  I do care.  I need to slow down enough to make my beautiful music play, and then the world will hear it.  And then the world will hear it.