I was so happy to see Kathy Wenning join the Cincibility “blogroll” with this post the other day.  Her son, Joe, is in his third year at Starfire and is one of the best conversationalists you could ever want to meet.  Kathy is helping us take the lead on exploring how families and Starfire staff might work together more closely, and reading her words, you can tell that we’ve got a fine fellow traveller along the journey.

Thinking about “families” lately has been top of mind for me.  In particular, I’ve been thinking about the tension around the relationship between families and paid professionals.

This isn’t unique to people with disabilities, of course.  Talk to any parent and you’re likely to hear about the teachers who they love/loathe at some point.

But I’m starting to understand that poor relationships are not just harmful to parents and professionals, which they are:   Hurt feelings, being left out of decisions, feeling like progress is being undone…these are common feelings and abundant on both sides of that equation.

But there’s a bigger loss:  adversarial and abandoned relationships between families and paid staff really represent a catastrophic failure on both sides to actually help build a good life for people with labels of disability.  I know that may sound melodramatic….”catastrophic, Tim?  C’mon, it’s not that big of a deal.”

It is that big of a deal.

A few years ago, a young woman (let’s call her “Maggie”) started at Starfire.  Maggie is a bright and friendly person; she’s smart, funny, loves yoga, and has an infectious laugh.  She talks and walks a little slowly, but as long as she takes her time, she gets around and gets her point across just fine.

Like almost all of the young people in their first year of the program, there were struggles adjusting to the new people and pace of things.  About two months into the program, Maggie’s mother and father asked if we could meet and talk about it.  When the day came to meet, Maggie’s mother and father arrived and I said something like “Well, we can get started as soon as Maggie arrives.”  It was then that her mom and dad told me that Maggie wasn’t coming.  I told them that it was really important that she was with us, so we could hear from her and include her in the conversation.  We offered to reschedule at their convenience and Maggie’s dad something like “Why can’t we just hash this out right now?  I mean, she’s not going to add to anything to the meeting.  Her opinion doesn’t really matter.”

I remember telling that story to Jo with indignance…”Can you believe it?  They didn’t even care that she was in the room! “

I was hot.  I was righteous and offended for Maggie.  How dare they!

And then Jo said, shaking her head, “Can you imagine what it must be like if the world tells you every day for 23 years that your child’s opinion and presence doesn’t matter?”

And that was the moment I realized that A) Jo is the Jedi Master of compassion, and B) I was not helping this family (or Maggie) by blaming them or pointing fingers.  In fact, I was probably further traumatizing them and taking the easy way out.  They had to accept the prevailing story about their daughter, or else their heart would continue to break every single day.  It was a coping mechanism, not a true devaluation or dismissal of Maggie’s voice.

We eventually got everything settled with Maggie and her family, and the next eight months were terrific.  Maggie explored her love for yoga and we started to work and think with her about lots of avenues for her future.  Unbeknownst to us, though, Maggie’s parents had put her on a waiting list to live at a place in Kansas for the rest of her life.

One day, Maggie’s mom called and said “Next week will be Maggie’s last day at Starfire.  She’s starting at a place in Kansas where she can go live until she’s 90 years old!”  She showed us the website of the place with its “beautiful facilities” where Maggie and 80 other people with disabilities would live and work.  Everything was “on campus, so they never had to leave!”

All of us at Starfire were pretty upset.  Not only were we sad to see Maggie go, but we knew that she was going somewhere that would be completely separate from the rest of the world, and we’re all pretty opposed to that kind of situation.

Her family and friends will all stay here, and her family expects that Maggie will live out the next 70 years or so surrounded by about 80 other people with disabilities and paid staff who will come and go.  Some staff will be terrific.  Some will not.  We can only pray that the ones who are not so terrific are discovered early enough that they cannot harm or neglect her.  But honestly, we all know the chances are good that she will probably not be cared for as well as Kathy cares for Joe or as all of your friends and family care for you.

Her life at the segregated institution in Kansas will be defined by her disability and deficits.  She will not have the chance to develop friendships with people who also love yoga or just like being around her because she’s got a great laugh.  She will not have as many chances for love, friends, meaningful work or anything else that young people without labels get to dream about and achieve.

We as a staff were having a hard time understanding why parents would make a choice like that.  As we worked through it, one of our staff was excited because her neighbors/friends were going into labor with the baby they had been expecting for the past nine months.  The parents had waited to find out if it was a boy or girl.  They wanted to be surprised when the baby was born.

They welcomed “Denise” into the world…a beautiful little girl with Down syndrome.

Within 24 hours, Denise’s parents were contacted by multiple “social service” agencies offering them assistance for their “special needs” child.  Within 4 days, over 10 different agencies had contacted them with various offers of special services and ways to cope with their “situation.”   Contrast this with Denise’s 2-year-old brother, who has no labels or known disability.  They have never received one single call about him from any agency or social service organization.

You may be thinking to yourself:  “No big deal….they’re just trying to be helpful.”  And you’d be right.

But we agencies and professionals unintentionally labelled Denise on the day she was born:  she is in need of help, charity and special services.  The rest of the children born that day just needed love and a warm home.  This is not to say that Denise won’t need help along the way (she will, as do we all!)  It’s just that from day one, Denise’s parents hear a story about their daughter that is much different from the stories of other children, and I worry that it leads them down the road to Kansas.

We want Denise’s life to be filled with people who share her neighborhood, passions, interests and gifts.  And we want her to live in the places she wants to live, maybe an apartment on the other side of town, and maybe even one day, with a partner or friend who she loves and loves her back.  We don’t want her to be defined by her Down syndrome, where she can only hang out with other people with Down syndrome or other disabilities.  We don’t want her parents to ever have to consider “sending her to Kansas” as an option, because she’ll have such a full life here that it will never cross their minds.

So the future hinges on families and agencies working together to build a life that works in Cincinnati for Denise.  We as professionals have been telling a false story:  Bring us your children, and we, in our infinite wisdom and unmatched talent, will fix everything!  It is tantamount to taking away the power of a family to do what it does best:  Take care of each other.  They do have a responsibility and they do have a voice in making a life together.  We should augment that effort, rather than usurp it.  Otherwise, we’ve got no one but ourselves to blame when parents make decisions to send their children to Kansas.

So Kathy’s post is another step in us working very closely, to discover what happens when families and staff step back and stop being at odds and start listening to each other and respecting what each other has to say and think about the situation.

This of course, is a post related to families and staff collaborating.  I didn’t get into the fact that both of those parties need to focus their energies primarily on listening deeply to what Joe and Maggie and Denise have to say about their own lives.  So please know that their opinions are being considered and respected is assumed here.  Imagine the power of the kind of alliance where people and their families and staff are deeply committed to each other and working together.