My husband read my previous post and asked in his 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.
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. This means having other women you can talk to who get it.
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 laughed when I responded and said: it wasn’t clinicians who taught me; it was other moms. It is always other moms.
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. 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.
Celebrate unpaid work
A long time ago, I belonged to a feminist mothering group. This collection 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
If work environments don’t exist for you, create your own. Some moms own home-based businesses. Others have carved niches in writing and speaking careers. Others have tapped their creativity and are artists. I co-own a health communications company called Bird Communications, which is a network of freelancers who work together on projects. The composition of our Bird Associates is interesting. We have many women just off maternity leave, or whose kids just began school – and they didn’t want to go back to full-time cubicle-land work. 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.
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.
The one thing that bands all us women together is resiliency. This is particularly true when you have a child with a disability. There’s a time for ranting, but then there’s a time to dig deep, put on our big girl pants and get stuff done. 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.