this is not OK, part 1

Edited to add on December 22:  I’m thrilled that Huffington Post picked up on this little essay.  Here it is, on their site (I edited it – it is cleaned up – and a slightly different version than this one).

My last day of my paid work position was on November 4.  I continue to struggle mightily with having to resign from my job, which I dearly loved.

The official word is that I resigned because of my son.  The unofficial – and true – reason is much more complicated than that.  I resigned because:

  • My son is 13 and too old for before and after school daycare.  He can’t be left home alone, never mind find his way back and forth to school on his own like most 13 year old kids.  
  • There are a few rare childcare spots for youth with disabilities, but since we don’t have a Ministry of Child + Family Development file open for him – he’s not ‘disabled enough’ and simply doesn’t have the right diagnosis for our government’s social services ministry, we can’t access those spots anyhow.
  • The school day this year in special education in high school is shortened – requiring a smaller window where I’d be available in between drop off and pick up time.
  • Either my husband or I need to be visible and available at his new school – to build relationships with teachers, to attend meetings, to respond to phone calls to pick him up early.  He also has medical appointments and (private) therapies that someone needs to take him to.
  • My husband makes more money than I do – deciding who was going to quit work was a simple math equation.

These are all system problems, not Aaron problems. There is a distinct lack of support from our government for parents of children with disabilities to contribute to the paid workforce.  I’ll pause here to acknowledge the even more alarming issue of system and societal barriers constructed to block people who have disabilities to hold meaningful employment.  Many ministries willingly contribute to the problem:  Education, Human Services and Health.

In my attempt to resolve this in my workplace, I asked for a more flexible work environment to be more available for my son.  I wrote a proposal asking to be converted to contract, where I’d be onsite for meetings, continue to do outreach with families, but work outside of the constraints of a 3 day a week work schedule.  I was told ‘no’ – Human Resources would not allow this arrangement. Irony alert: my employer was a children’s hospital within a health authority.   This was an ego-shattering conversation- accommodations would not be made for me.  I have my hat in hand.

Workplaces that are not family-friendly nor flexible are not Aaron’s fault either.  This is an issue that affects mostly women, who statistically make less money than their male partners (if they have one) and are the ones in a relationship who typically have to drop out of paid work.  This is a feminist issue. (Note:  there are also many wonderful male caregivers out there – I’m not intending to exclude them.  But I’m speaking to my own situation).

I’ve been oscillating these past two months between deep sadness and simmering rage about my paid work situation.  I’ve been asking around my community of moms who have children with disabilities what they do about paid work.  Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful.  Other moms have teenagers and have been forced to opt out of paid work, or have flexible employers – although these types of employers are sadly the exception.  Yet others piece together a freelancing life, picking up work here and there on a project or contract, like I do now.

Many families slowly inch their way towards poverty.  We bleed money every month – ironically when we need it even more for our youngest child than we did with any other of our kids – to pay for therapy (which is all privately paid in this province, and expensive) and to save for his future (with a provincial government with one of the poorest rates of adult disability assistance in Canada).

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee.  When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents got inevitably older – which was not the best combination. So the mom had to resign.

Other moms have left established careers to become Educational Assistants in the school system – low-paying, but at least the work hours paralleled their children’s school hours.  Others joined non-profit family support or disability organizations – which are typically more understanding of family need, but who also don’t pay well.  I’ve been picking up freelance editing and writing work and continue my (very part-time) speaking career.  Other moms have to opt of the paid workforce entirely to concentrate on homeschooling, unpaid advocacy and/or caregiving work instead.

This might all sound fine and dandy.  We make work literally work, somehow.  While I was working, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work.  But I’m thinking about it now, a lot, having been soundly humbled and sitting here in my (relative) place of privilege.

As with many of the issues in the disability world that are not ok, the lack of support to allow women who have children with disabilities to work is also not ok.  This is an equity issue. Women with typically-developing children have fought for many years to have choice as far as paid work – to choose to stay at home or to choose to work.  That choice is automatically taken away from women who have children with extra needs.

One of my connected mom friends kindly did a lit search for me and forwarded articles on this very topic.  Titles ranged from:  Mostly the mother: Concentration of adverse employment effects on mothers of children with autism; “I feel as if I’m the one who is disabled” – The Emotional Impact of Changed Employment Trajectories of Mothers Caring for Children with Disabilities; and The Economic Costs of Childhood Disability.

In the next few weeks I’ll be sifting through these articles and writing more on the topic of paid work in our world.  In the meantime, I’ll end with Ellen K. Scott’s quote from her excellent paper, I Feel as If I’m the One Who is Disabled, from Gender & Society, Vol. 24 No. 5, October 2010 672-696:

“Similar to the findings in other studies, mothers mourned an identity transformed and the loss of an essential part of themselves (Shearn and Todd 2000). They blamed the lack of alternative care, the inflexibility of the employers, and their child’s (or in some cases children’s) extraordinary needs, which required extensive direct and advocacy care (Litt 2004).”

Our kids’ needs are only one part of this formula.  The way our governments and our workplaces support – and do not support – those of us who care for vulnerable children is both an interesting and disturbing question.  It is a feminist question, an equity question and an economic question.  I remain committed to the notion that change will only happen if we shine light on our issues by sharing our stories.  The invisible stories of caregivers need to be told.

4 thoughts on “this is not OK, part 1

  1. Tara Hogue Harris says:

    I always appreciate your clear thinking on these issues affecting your life, and how you don’t leave your emotion behind in sharing that thought. I’m always illuminated by reading your writing – thanks, Sue.

  2. sue robins says:

    Thank you Tara. I always feel so very fortunate when people like you, who aren’t a part of our disability world, show concern and interest. Before I had Aaron, I’m not sure I was so open-hearted to other communities…and that makes you an exceptional friend. xo.

  3. Fil says:

    More needs to be said about this issue!!!
    Good work!
    Instability is incredible.
    Add other factors like divorce or health insurance or prolong hospitalisation of kids without social benefits and we are completely lost!
    Institutionalization????

    F

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