Dignity

A lot of doors open to you in Disability World. Sometimes I like what I see behind them – people with big hearts, open arms, a desire to really know you. Sometimes I want to slam the door shut on the ugliness I find.

Sometimes I find something I’m not quite sure how to handle, so I leave the door cracked a bit as I think.

In Disability World there is opportunity for charity. It seems there is no shortage of groups wanting to do things for my “special” child.

Truth be told, this often makes me uncomfortable. Part of it is simply wanting to provide for my child just like any other parent. Part of it is fear of “othering” my child – typical kids don’t get charity bikes, why should mine? Part of it is fear of making it seem like my life is just so hard, so financially draining that I must depend on others to get by. So many people think my child is a burden – on my family and on society – that I hate the idea of feeding into that by seeking or accepting outside help.

On the flip side, who am I to deny my child an opportunity because of my own hang ups?

It seems that message, intent, and delivery are a huge part of what makes me ok or not with an offer of charity.

Take for instance something that happened when Rowenna was about a year old. One of hubby’s coworkers had taken up a collection at his church and handed hubby a wad of cash on Monday morning. I can say with certainty that hubby does not discuss financial matters at work, and even if he did, there is no way he would paint a picture so dire as to inspire a coworker to take up a collection at church.

Hubby came home, dropped the money on our dining room table, and we had one of the most awkward conversations of our marriage – what on earth had inspired this, and what on earth to do with it. We wondered if we should give it back, but wouldn’t that make us ungrateful? We wondered if we should donate it to a charity, but it didn’t seem like quite the right thing to do – people had given money for Rowenna, not for the food bank. We sat on that money for a long time and it just kind of festered. The uncomfortable uncertainty of it gnawed at us.

What we wanted to know but didn’t have the courage to ask was: did these people give us money because they pitied us? Because they thought Rowenna’s life must be somehow less-than because of Down syndrome? Or was it with pure heart and a true desire to do something nice for another person, disability notwithstanding?

Take another example. At a conference we recently attended, I spoke with someone representing a children’s charity that pays for adaptive play equipment. She boldly told me my child would “never” ride a regular bike and we should apply to the program for a special adaptive bike. Should I accept assistance from a group that judges my child before ever meeting her? It made me wonder what kind of sob stories they tell their donors to get money for this adaptive equipment.

And now we’ve been offered a different kind of financial support. Not really a charity at all by the traditional definition, but a taxpayer funded program that works in partnership with our Medicaid waiver to provide additional services and supports for families whose children come with needs beyond what is typical for a child of the same age. When Rowenna was born, this program had an 8 year waiting list so we signed up, not knowing what her needs might be so far down the road. But due to population shifts and changes in funding, our number is up and it was time for her eligibility assessment.

This is one of those horrible, demoralizing things you get to do in Disability World. You can have help, but only after you prove just how “bad off” your kid is compared to her peers. You can have help, but only after you spend an hour listing all the “can’ts” and never discussing the “cans,” because your case worker has warned you that “cans” could work against you. And so for a little extra help, in the form of tax dollars from a system I have contributed to for 16 years, I sold my kid short. And it felt horrible.

Same thing as with a charity. A sob story, a tragic tale of need. Look how different my child is, please give me help.

And even though some are privately funded, and some are publicly sanctioned, I can’t help but wonder what the overall message is and how we might improve upon these systems. (Having said that: I fully and completely support publicly funded supports and services. I also support charitable work. I’m asking here about how we determine eligibility and how they are delivered.)

How do we get support to individuals and families whose quality of life would be greatly enhanced by that support without forcing them to constantly assess and report the things they can’t do? How do we change the system so disability is not really a disability, but just a different way of being in the world? How do we change the pace of life, the accessibility of life? The nature of the workforce, the measure of success?

How do we create flexible system that responds to needs without judgment and arbitrary, rigid schedules? And how do we train people to work in that system so that they see people, and not just needs and deficits?

How do we make sure needs are met while still allowing for the possibility of dignity?