I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software!
When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters.
I read two moving posts by parents this morning that I want to share.
A meandering rant about how more is less and less is more spoke to me. Jennifer Johannesen writes:
We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…
I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences. Are you wondering, Is she really saying this? How could she not want these things for her son?!
Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.
And Elizabeth Aquino had this to say on Mother's Day: Tonglen
When I am near to despair over Sophie's seizures I practise tonglen by breathing in the sufferings of all the mothers I know who have children that seize and all the mothers I don't know who have children that seize. And then I breathe out. I breathe out love and compassion and health and happiness for all those mothers and all those children. I believe that embracing suffering, meeting it, accepting it and even embracing it might lead to understanding it, and that understanding connects me, deeply, to others.
Some other interesting links:
Life and the Cosmos, Word by Painstaking Word
A New York Times interview with Stephen Hawking:
"My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with," he says. "Don’t be disabled in spirit, as well as physically.
'Holy Nonsense:' Autistic artist's work intrigues (see image above).
Hope builds for treating intellectual disabilities
Condo blocks mom from installing wheelchair lift for disabled daughter
600,000 adults could have autism that has gone undiagnosed
New Disability History Museum website
Posts
3 comments:
Hi Louise! Thanks for quoting my post...
Although often well-intentioned and enthusiastic, our support services can forget they are not the only ones! Many parents of kids with multiple disabilities visit several clinics a year and it's just not reasonable to do everything. So it's up to parents to prioritize.
A much bigger, more philosophical issue: the behemoth that is the healthcare system must be accountable and transparent. Fair enough. But the very nature of it requires a level of surveillance and reporting that I think comes at a direct cost to the family.
The instruments and tools that are used to create and measure goals for each child are, I think, primarily there for organizational and administrative purposes. Some (not all, I'm sure) being products of the 'fake work' phenomenon I wrote about.
Hi Jennifer -- I'm so glad you wrote. I meant to post on your blog.
I'm grateful that you've given such thought to this topic. I read your words and they ring true for me, yet I don't think I would have been able to look at it from a big picture perspective.
I think Jim Conway, who spoke at the conference I was just at, would be fascinated by your experience. We kept hearing about how health care has to be designed 'with' patients/families and to fit patient/family needs and preferences, and not designed around the organization or the hospital or the doctor's schedules, etc.
One of the negative impacts of the endless goal-setting is that parents of kids with multiple issues never feel they have done enough.
Thank you very much for posting on this important topic.
I am so glad that you highlighted Jennifer's post -- it resonated for me on so many levels, and I really like your response, too -- linking it to the work you're doing in patient-centered care. Thank you for highlighting my blog -- I so appreciate it and feel honored, particularly after all the wonderful press you've gotten of late, Louise! So well-deserved.
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