reflections related to disability advocacy, family and (needed) cultural change
Monday, February 01, 2010
A Delicate Dance
The relationship between someone with a disability and the people who provide their support can demand some complex choreography.
Since my daughter Jenn started at her new school this year people notice a difference in her ability to converse. She participates more. People notice that she takes more turns and clarifies more when people don't understand what she said.
What changed? Mostly, I think it's that she no longer has a 1:1 aide.
Now, don't get me wrong, Jenn had wonderful, well-trained, supportive aides. They were intent on making her more independent. Their presence made TONS of experiences available to her in our public school that she would have missed without them.
Yet, while the existence of a designated support person creates lots of opportunities, it also creates a tricky relationship. This relationship must be functional if the aide is to provide effective, individualized support. However, this relationship also turns the two--supported and supporter--into a "partnership."
A partnership is a social arrangement with etiquette and expectations. It requires give and take. It's both a useful and complex situation. (And it doesn't just occur in disability, executives and their secretaries contend with these issues on some level, as do couples.)When you're working with someone who is in partnership you are not just dealing with the individual--with either individual--anymore. You are dealing with the team.
I have met people in support situations who try to negate the "partnership" dynamic. I have met a deaf woman and a blind man who instruct people who are interacting with them not to address their support staff. Ever. While the desire to keep lines from blurring and to be addressed as an individual is understandable, it is awkward for observers and almost abusive to the support person to be treated this way. Consequently, this isn't the way most partnerships function.
Others try to treat their support partners more as friends. This works great if both people are compatible and can negotiate the leading-following nature of support--if not it gets ugly.
And if the supporter is an adult and the supportee is a child the partnership can't be anything but directive. But an adult with a cognitive disability is NOT a child. Providing adequate support AND self-determination requires both intention and attention.
With Jenn her partner status presented as a subtle waiting, a slight holding back and non-ownership of her role in conversation and other situations.
There are trainings and articles on the subject (like this one) but I don't think the questions of support vs. enablement, and codependence vs. interdependence vs. supported independence ever completely go away.
Parent as Support Partner.
When the parent is the support partner the complications of both the partnering and the parenting relationship get piled on even thicker.
When I am the support person my partner should be as self-determined as possible and I am there to facilitate.
When I parent I create the stuctures and expectations for my children...
My daughter needs both of these things, and it's hard to do them both at the same time.
Sometimes it's so easy to over-support because I do know what she's saying, because I know how hard some things are for her, because I'm her mother and KNOW what's best, because I don't have an objective view of her maturity or capability, etc, etc, etc... Beyond this, keeping my support-partner hat on all the time can be stifling for both of us--knowing when or how to remove it is really difficult.
When am I a parent? When am I a partner? And what if I need something?
Recently I turned down an evening swimming program for my daughter because I would have needed to swim with her. The opportunity to swim is good for her, but swimming after supper would disrupt my sleep which I just can't afford. The program director found a volunteer to swim with her... and I still feel a little guilty.
And when do you turn off the "because I'm the mom" mojo? I have seen parents of adults with disabilities subtly and not-so-subtly direct their adult child's choices. A partner who is also mom has undue power. Should she exercise that power?
Yet, NOT being mommish, being professional and detached doesn't work either. People need their parents to be attached and parental. At least sometimes.
And how does this work with the rest of your family members?
So far this is what I try to do: I try to engineer opportunities for my daughter to run alone--in big and small ways whenever possible. When she does need a partner, I work hard to set up situations that are healthy and effective. And when I am the partner I try to keep a balance between parenting and partnering. When things get out of whack I try to change.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.