The Birthday Girl Gives Everyone Else a Gift

birthday cake
birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

Advertisements

No Pity: part 2

No Pity: part 2

I’m still thinking about my meeting with the young boy last week at my daughter’s after school program. I wanted to follow it up with an apropos book recommendation while we’re on the subject of disability and pity, or the aversion to it.

Once again, I was given some required reading for my disability fellowship. Once again, I put it off–too much disability in real life made reading about it less than desirable. And also once again, I was glad I did. Here’s what I read and what I thought about it:

No Pity: People with Disabilities Forging a New Civil Rights Movement is a chronicle of the Disability Movement as told through the stories of individuals who lived it. “Nondisabled Americans do not understand disabled ones,” author and nondisabled journalist Joseph Shapiro begins the book, and for the next 400 pages we are taken on a journey that posits and answers the difficult question of what disabled people really want from society and why we nondisabled people should want that too. Through personal histories of the folks who have led our country through an enormous political shift that parallels the civil rights movement as a whole, Shapiro attempts to answer that question with a shot across the bow that his title delivers: no pity.

Revealed in these stories is the difficulty for nondisabled—and sometimes disabled folks as well—to change how they think about disability and the individuals who have them, progressing as a society rather quickly from one who shuns, to then paternalistically supports (and pities), and then ultimately accepts and welcomes. In the detailed story-telling of people like Ed Roberts who is a post-polio quadriplegic who started out attending school by phone from an iron lung and eventually paved the way for independent living for many folks with disabilities, we begin to understand the significance of the progress that has been made. Shapiro does a wonderful job communicating how many of these changes were far too slow for the individuals relying on them, while culturally the changes were happening at seemingly lightening speed for our country as a whole. From the Gallaudet revolt in 1988 to the passage of the IDEA and ADA, Shapiro builds, brick-by-brick, the foundation of the house that the disability rights movement built. 

For me personally, the book was both empowering and confounding. On the one hand, I appreciate how having a “no pity” approach to raising my child with special needs allows me to envision and create a richer and more included life for him. Much progress has been made and there is so much to be grateful for. Yet I think that for those who have spent years advocating for disability rights, there is a lack of awareness that most people’s cultural attitudes about disability have not changed. I continue to meet parents of children with special needs who, despite advocating for their children’s needs for decades, continue to hold beliefs that their own children’s lives are not worth living. As a society, it is important for us to keep teaching lessons of awareness and acceptance even though so much progress has been made in policy. Deep, widespread and lasting cultural change takes time.

Reading the book, I see how far we have come. Reflecting on last week’s meeting in the after-school room, I see how far we have to go. Let’s get to it.

The Personal is Political is Professional

Many years ago I came across a refrigerator magnet in a quirky gift shop that I have often recalled since. On it, a line-drawn skeleton lies in repose in an open coffin; a thought bubble rising from his skull asks: “I wonder what I’m going to be when I grow up?”

To say I’m a jack-of-all-trades is an understatement. I’ve been a business consultant and a professional weaver. I’ve sold cheese and paté in a European capital. I’ve been a project manager at a translation company and I’ve sold art and antiques on the nation’s largest public television auction. I was the office manager at a textile conservation center that worked on Jackie Kennedy’s wedding dress and Babe Ruth’s baseball jersey and I conducted phone surveys of college students. The past twenty years of my professional life have been circuitous path.

While I am grateful for my broad range of marketable skills and my uncanny luck finding fascinating jobs, I’ve envied folks with a laser-like professional focus, able to immerse themselves in a body of knowledge and become a leader in an industry or organization. Most of all, I’ve envied those with a calling, with a joyful sense that their professional lives and personal interests are perfectly entwined.

Lately though I’m noticing that even in my own life, the lines between the personal and the professional — and even the political — are becoming blurred. My experience advocating for my son’s medical, behavioral and cognitive needs have actual street value, and I’m being paid to pull up a seat to the table and share what I know. The work, although not directly, is funded by policy which I in some insignificant way have tried to help sustain. Through this work, I learn of resources which will directly benefit my son and family. Suddenly, it’s all of a piece. And I like this feeling.

I’m not ashamed to say that I didn’t set out to do this. I don’t think most disability advocates did. We were all just out there, doing our thing, being a waitress or a salesperson or a book keeper, when along comes this wonderful child that changes everything. And suddenly, the Personal is Political is Professional.