Finding heart in darkness

We humans are fascinated with negativity, with vitriol, the dark side.

Good versus evil sells at the movies and plays out everywhere from politics to interpersonal relations. Lookyloos actually click on terrorist videos of beheadings. Hate is spewed everywhere there is an opening for someone to share a disapproving opinion or bequeath a foul online comment.

When I shared a recent triumph about progress in getting my city to stop excluding kids who have certain disabilities from programs where most kids (including my own) could easily fit in, one of my siblings replied to my email: “What horrible things did they say?”

My message to my family had been concise. I had mentioned that I’d faced objectionable remarks while trying to get my city’s recreation leaders to be more inclusive, but the important thing was that I was finally making a dent. Their littlest nephew was looking adorable on the front page of the newspaper, and I wanted to share the story that the city was finally willing to consider ways – not just whether – to let him in to the after-school enrichment program his brother regularly attended.

Raphael Avery, professional photo www.dailycamera.com. Cliff Grassmick November 6, 2015

Courtesy Cliff Grassmick, Daily Camera, Nov. 2016

My sister wanted to hear the nasty stuff. That caught me off guard.

I want to promote what’s going right, not dwell on what went wrong.

I consider myself a sunny-side person. I’m no perpetual Pollyanna, but I feel innately equipped to turn hardship into a gift and find ways to be grateful. I practice finding the upside while weathering life’s tempests. My friends like to point this out, which makes me feel sane.

So I didn’t respond to the email with a list of times my boy and I were treated poorly.

I tucked into my brain the idea that people see and hear what they are tuned into seeing and hearing. I could continue to speak my truth with a willingness to hear the haters keep hating.

In fact, when the recreation department’s exclusion of my son came into the public eye after a personal blog I wrote got picked up by a community Facebook page and went a bit viral, I was extremely careful to keep things positive and take responsibility for any negativity that might come up.

I kindly addressed city council to explain how Lafayette, with its sign at the entrance to downtown that says “Welcome. We are building an inclusive community,” isn’t actually as inclusive as it thinks.

Sign: Welcome. We are building an inclusive community.

My husband and I stopped the people we know in the media (thanks to Greg’s being a longtime reporter) from outright shaming the recreation department on Twitter and the Denver Post opinion page.

I refrained from telling local reporters the ugly ways recreation folks had disparaged us and instead tried to make department leaders look like heroes.

I rallied citizens to speak politely, calmly, and considerately about the issue. I showered those who spoke out with gratitude.

I prevented boycotters, who were angry about my son not being allowed to play, from taking their business elsewhere by convincing people that I hadn’t done a good enough job yet to educate those in charge about what it means to have an attitude of inclusivity.

facebook comments

For months, ideas I’d suggested had been routinely denied, or at least delayed from being looked into. I was kept out of discussions. I was told, we can’t talk about “how to be inclusive,” and, we’re just so limited in what we can do.

So I tried sharing ideas about easily accommodating my child’s needs using existing resources and found a skilled caregiver who offered to support him in the enrichment program for free, because what good is it to voice (or hear) a concern without sharing ways to resolve it?

I solicited no handouts. Like anyone, I had paid for both my kids to enroll in the after-school program to enrich their lives, not shirk my caregiving responsibility. But I also volunteered my time and offered resources. I brought professionals, who make their living by including marginalized people, in to help my city make it work. Lori Goldman, the supervisor of Boulder’s Expand inclusive recreation program, told me that I had gone way above and beyond to help Lafayette Recreation accommodate my kid.

While my son (and I at his side) attended a “trial period” that gave the city time to consult its attorney on reducing any potential risk of having a kid with special needs in the program, I tried to show the staff how to work with my son. Even though the city expressly stated that the point of the trial was to test feasibility, not train staff, the welcoming childcare workers were eager to learn and realized how including my child improved everyone’s experience.

It was disheartening when a city-contracted nurse consultant, who doesn’t specialize in kids with special needs as far as I know, ultimately determined that my son’s needs were too needy. I’m told she cited that he choked on a snack during the trial period. I’d been there; he didn’t.

The recreation department claimed to have my son’s safety in mind when it rejected him, but its actions show that it was focused on keeping itself legally safe. The director publicly calling my kid’s needs “severe,” does not make it true.

Still, I kept trying to be accommodating of the organization’s learning curve about how to accommodate a child’s needs.

If one is willing to listen to families to better understand needs and brainstorm adaptations to try (and be willing to fail, and try again), just like the camps that have included my son successfully have done, it doesn’t have to be as difficult as the recreation director asserted. Besides, like the promising resolution the City of Lafayette passed last month to reaffirm its commitment to diversity and inclusion, working together to find ways to say “yes” is the right thing to do.

What started as, We don’t know if we can include him, and then became a definitive “No” along with a refund of my son’s tuition, is now a maybe, again.

All along, I made no demands or threats, showed no cowardice or anger, and never whined or expected someone else to fix things. At first, I simply wanted to arrange childcare so I could work during working hours. Soon enough, my bigger goal became preventing other children from being denied.

One of various solutions to the problem I had offered is finally being employed. After so much public attention last autumn, the department suddenly became able to hear the suggestion of using a community therapeutic recreation provider, Out & About, to train after-school instructors (that is, as long as the idea was suggested by Out & About directly).

Disability awareness and inclusion strategies training began at the end of January. I am truly proud of the rec director and my city for such progress. I’m eager for their next step.

So now, what benefit would dwelling on the negative, on the times I wasn’t heard, be when my message that we can all do so much more by working together may finally be starting to sneak through? Playing the victim ain’t my thing, and it’s worthless when I can instead continue to advance my cause cooperatively.

I certainly never sued anyone, even though many think the argument that a publicly-funded entity not upholding ADA (Americans with Disabilities Act) law could easily be made.

So it was surprising to read the following comment show up on my blog last week:

“NO! You do not go around suing the city for your own personal benefit. Why don’t you show up and teach them how to work with you and your child? It sounds to me like you are simply pushing your kid off onto others and then crying wolf when someone at the rec center tells you the truth.

“Taking your huffing and puffing down to City Council, Planning Board, etc.. would be a MUCH better way to go about this. NOT taking money from ALL of us.

“Of course parents need a break from their child, but it seems extremely selfish and less than humble when they show up somewhere and immediately declare that they are being discriminated against.”

I can’t imagine the person who wrote this (named “Ucantbeserious”) actually read my post he or she was commenting on, but I hear the outrage. And I care about it.

I wonder why he or she feels so threatened.

I wonder whether others feel that cases of fighting discrimination – which take so much time and bravery to battle and which rarely come to light until injustice happens over and over again and one finally feels compelled to make a stand – is such a knee-jerk thing.

I wonder why people act as though basic equality isn’t really deserved. I wonder about so much misunderstanding, and negativity, in the world.

And then I wonder, who else can I reach?

 

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About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Advocacy, Down syndrome, Parenting Special Needs and tagged , , , . Bookmark the permalink.

One Response to Finding heart in darkness

  1. Steve Kutno says:

    Powerful remarks on so many levels. I applaud your strength, courage, tenacity, and bright outlook.

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