How to make it ok (part 2 of 2)

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@yogimemes

A shorter, less profanity-laced version of this essay is up on Huffington Post.

My husband/editor read my previous post and asked in his typically pragmatic way:  so what are you going to do about it?  This is a fair question.  I presented the problem of mothers with kids with disabilities being forced out of the paid workforce. Now what is the solution?

Well, it turns out there are lots of answers to this question, because families of kids with disabilities are incredibly resourceful.  We make lemonade out of lemons every single day.  Sometimes we rant but then we dig deep, put on our big girl pants and get shit done.

So family-friendly employers are rare and our governments don’t care about us.  Here’s what we do instead:

Connect

Whether you call it your herd or your people, it is so important to reach out to find like-minded families.  Before I had Aaron, I called these wonderful women my mom friends – in the disability world, the term is medicalized and called peer support.  No matter – the result is the same.  This means having other women you can talk to who get it.  When my now-adult kids were young, I met my best mom friends at playgroups, La Leche meetings and in the school hallways.

With my third kid, I’ve had to expand my definition of  connecting. Connecting happens through Facebook, Twitter or email in 2016, and that’s ok.  The days of meeting around the kitchen table are rare. I have to be more creative in the ways I get together in this era of busyness.

The mom network of information sharing, particularly in the complex world of disability, is very powerful.  A few months ago, I was in a meeting with health professionals. One of them asked me:  what clinician has taught you the most about resources and services?  I actually laughed when I responded and said:  it wasn’t clinicians who taught me; it was other moms.  It is always other moms.  Recently, on Christmas Eve, a mom emailed me asking a question about renting a pediatric wheelchair.  I didn’t know the answer, so I emailed three other moms and one clinician.  Within 4 hours on Christmas Eve, I heard back from all three moms with detailed responses.  The calibre of the women in my universe continues to impress me.

Alas, adult relationships also take time. I’ve learned to be patient with this process, especially since moving to a new city two years ago. Sometimes I’m lonely. Success to me doesn’t mean having a dozen girlfriends I go to Mexico with every year (although I’d be open to that, ha).  It means having different women at different times to lean on, to ask questions, to bounce ideas off of and to vent with.  One mom and I have an amusing relationship sharing GIFs on Twitter.  Another mom has kindly included me in her group of moms who have a subscription to a local theatre company.  A mom I met at work invited me to her yoga class.  These pieces of friendships make me feel less alone and these women are my great source of support and love.

Organize

I can attest that the only way change has ever happened is when regular folks organize together.  Governments and systems never change on their own – never ever ever.  They only respond to pressure from outside groups to do the right thing.  So much has changed in the disability world over the past 50 years.  People with Down syndrome are no longer automatically institutionalized at birth. Now our kids are included, for the most part, in their community schools. It wasn’t until the 1980’s that heart defects in babies with Down syndrome were even surgically fixed – before that, babies were left to die because of ‘quality of life’ bullshit.   Do you think this positive change happened because of bureaucrats?  No way my friends.  These advancements happened because families stood up, organized and told their stories.  They insisted that the status quo wasn’t okay anymore.  Change came from the people, not from bureaucrats, who, save for rare champion, are only invested in keeping things the same.

Celebrate unpaid work

A long time ago, I belonged to a Ottawa based group called Feminist Mothers At Home.  This group of moms was lobbying the government for recognition of the value of all unpaid caregiving work – including caring for children, elderly parents, or loved ones who were sick or had disabilities.  My involvement with them taught me an early lesson: in society’s eyes, you do have to be counted to count.  Other wiser moms taught me that women are often silenced and the value of speaking our truths.

I’ve never used the terms ‘volunteering’ or ‘stay at home mom.’  I prefer to say unpaid work.  This work is important – uncounted, undervalued, unrecognized – but caring for others is the glue that holds our whole world together.   If I meet someone new, I ask – do you work outside the home or at home?  Because work is work is work – whether you get paid or not.

Recalibrate

When I heard Ian Brown speak in October, he said his son Walker has taught him to constantly recalibrate.  It is true that our kids show us what’s important in life, but I’ve been guilty of ignoring that, or fighting it if it isn’t in alignment with what I thought was true.  A big part of paid work is identity.  I’ve had to constantly adjust my identity over the years and this has been hard.  Give yourself time to grieve for the loss of the so-called perfect life, in order to accept the life you have.  This might mean mourning career plans or graduate degrees.

In some ways, it is easier to wake up, get dressed up, arrive at my office, go to meetings, feel important.  When I have a job, the ‘who’ part of who I am is pre-packaged and handed to me for 7.5 hours a day.  When I’m set adrift on my own, I have to make this up myself, every single day.  Recalibration is about constant change, but recalibration must be done to find peace in your heart.

Open your own damn business

Four years ago, I was a lonely freelancer, picking up writing gigs here and there and working from my desk at home in between school drop off and pick up time.  I never got invited to anybody’s work Christmas party.  I knew that I wasn’t the only independent feeling that way, so my husband and I started a company called Bird Communications.  It began as a community, with photographers, designers, writers, editors, researchers – who all, for their own reasons, didn’t want to work for the ‘man’ in a staff position.  We met once a month for Bird Gatherings at a local coffee shop.  We got to know and care for each other.  We hosted our own damn Christmas party at our house, which was packed with Birds and their young families, all pining for a different model of work.  Slowly we transformed from a social, networking and learning community to a true health communications company.  We began to win paid work projects.  We never promise full-time work, and we place people the best we can, so this model doesn’t work for everybody.  But we help our Birds find contract work and make sure they get paid – an important factor for freelancers.

The lesson here is if you build it, they will come.  The composition of our (now) 26 Birds is interesting – we have many mothers just off maternity leave, or whose kids just began school – and they didn’t want to go back to full-time cubicle-land work.  So they joined us instead.  Of late, we have a number of smart creative moms who are communications or health professionals AND who have kids with disabilities.  They are an untapped, ignored, and simply awesome workforce.  We feel fortunate to have them amongst our midst.

Paid work

I’ve learned some hard lessons from the paid work world.  If I do venture back into that arena, I’ll choose my employer more carefully.  At my interview, I’ll ask some hard questions, like:  what happens if my child is hospitalized and I have to take time off work? How flexible are your hours, really?  I’d ask around about the work culture to see if it is an employer more interested in delivery of work than the optics of me sitting at my desk every day.

I’d better inform myself about benefits and paid leaves.  When my son was in the hospital last year, I was told that there was no paid leave for me to take time off work because I was in an out-of-scope position.  At the time, I was so whacked out with stress that I didn’t question this – I merely dutifully took a week off without pay.  Later, I found out there was a provision for such an absence.  It was my own fault for not contacting human resources and knowing my rights.

Part of having children is redefining what success looks like.  This is different for every woman.  For me, this means more leaning out, more acknowledging that 18 months in a position isn’t a failure, recognizing that I need to be fluid with both my identity and how I define myself.  Sometimes work is sometimes paid and sometimes it is not.   This also means suspending judgment and supporting other women in their choices.  The mommy wars is so distracting from the real issues at hand – you never know what your decision would be unless you walk in someone else’s shoes.  We are all doing the best we can.

Finally, 2016, I’m exhausted from keeping the system’s secrets.  I’ll cycle back to the cheeky quote at the beginning of this long essay. My 2017 resolution is based on a rather irreverent book I picked up over the holidays:  The Life-Changing Magic of Not Giving a F**k by Sarah Knight.  Be irreverent about things that don’t matter so you have time to be reverent about stuff that does.

Stand up.  Band together.  Use your voice.  You are bad-ass.  You are a sorcerer of divine light.  Don’t ever allow anybody to take that away from you.

3 thoughts on “How to make it ok (part 2 of 2)

  1. Katharina Staub says:

    I love it Sue. Your writing, your re-defining, your honesty and open- mindedness.
    It takes courage to start again, and it takes strength.
    You do it all the time. You do it very well. Thank you for showing that to me.
    Love K

  2. sue robins says:

    Katharina – you are always so generous with your comments and thoughts – thank you. I know we are all chipping away at change in this beautiful, messed up world using our own strengths and in our own ways. I continue to be so impressed with the work you do with your children and your community. xo.

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