In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!

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Mi casa es everybody’s casa

I am sometimes asked what it feels like to share so much personal information on this blog. After years of raising a child with special needs, I can honestly say that privacy is something I barely remember.

I know lots of special needs parents who probably feel the same way. It didn’t happen overnight. I was a private person once. But like a the proverbial frog in a pot of water who doesn’t realize that he’s slowly being boiled, my sense of privacy has slackened without much notice.

For me, it probably started with a Home Visit, the sine qua non of childhood intervention. A nurse, a social worker, or an intake coordinator, likely from Early Intervention or other state program, came to my home, sat next to me on my sofa to ask a few questions. For this visit, I probably picked up the house, or at least the living room, and maybe even put on a pot of coffee.

Fast forward a few months or years, and I find myself giving out a key to anyone who asks for it or simply yelling “come on in!” whenever I hear the door ring. After the 100th visit from the speech therapist, occupational therapist, physical therapist, developmental specialist, nurse, school psychologist, agency evaluator or personal care attendant, I realize I have stopped brewing coffee, stopped running around to pick up, stopped slapping on some lipstick because I just can’t keep up the facade, and frankly, I realize that they just don’t care. I tell myself that they’ve probably seen much, much worse than that pile of unfolded laundry on the dining room table, and anyway, it’s clean, so it’s nothing to be ashamed of.

It’s not only in my house that my sense of personal dignity gets “loosened up.”  The hospital stays are particularly challenging to maintaining a sense of dignity. I find myself woken up at 6:30am by an army of white-coated people from an uneasy sleep in a fold-out chair next to my child’s hospital bed. Wiping the drool from the side of my mouth, directing my comments off into a corner so as not to knock them unconscious with my morning breath, I curse myself for not sleeping with a bra on under my pajamas while I pat my head, trying to visualize how bad my case of bed head is. But at the same time, I just don’t care.

I have even gotten used to having people in my proverbial “space” or as my daughter would say, in my “business.” I answer questions about my son’s health and development, my pregnancy and delivery, my stress level, my income, my relationship status, my choices, my actions and my inactions. It feels like I am being judged, and in fact, I am. It is an invasion of privacy but I offer the info willingly. It is the price I pay in order to receive the services and resources that will help him thrive.

The details of my life, my story, becomes a currency that I offer willingly in the service social change and reform as well. In meetings with political staffers, on task forces and in board rooms, I share some personal details with no regret because I have learned that while data drives the discussion, it’s the personal stories that keep everyone at the table. I could talk about theory and percentages until I’m blue in the face, but it’s often a small anecdote that drives the point home.

Even out here in the blogosphere, it’s the stories that connect us even though we might have never met.

So this week, when I invite several personal care attendant candidates in for interviews and host two medical students to teach them about raising a child with complex needs, or even when I hit the “publish” button on this blog post—it won’t feel weird. I’m used to it. Come on in.

Open Arms

I’ve had another one of those experiences that are so complicated that it’s not easily digesting itself into a post. But it was too good not to share:

There are a lot of spectrums in the special needs world. One of them is the spectrum of embracing folks with disabilities in one’s everyday community. The spectrum looks a little like this, from one end to the other:

  • Rejection: “You’re more than welcome to join us if you meet the following requirement: you are exactly like us.”
  • Tolerance: “We’ll put up with you because you could sue us if we don’t.”
  • Acceptance: “Since you asked, sure, you can join our game.”
  • Embracing: “Great! You saw our invitation. We’re glad you came. Tell us what you need to make this work.”

…and many nuances in between.

I don’t expect folks to embrace my child with a disability all the time. I don’t think mainstream folks have had enough chance to rub elbows with folks with disabilities yet to have the necessary appreciation for difference that’s required for get how wonderful it is.

Acceptance would be nice, but the problem is that after experiencing mostly rejection and tolerance (usually stemming from ignorance and inexperience rather than malice), I’ve gotten tired of the necessary wheedling and cajoling required to gain admission. But then, if folks with disabilities stay home, others don’t get experience with them, and the cycle of ignorance and rejection continues…

Thus it was that I found myself completely paralyzed to try to enroll my son in an informal, impromptu, neighborhood soccer “clinic” last weekend. After last winter’s adaptive soccer debacle in which two dozen kids were sent out of the gym so my son could play soccer with a dozen middle-aged men with disabilities, I had set my sites on a more inclusive rather than separate setting. But my fear of not being accepted was pretty huge.

As the start day approached, I couldn’t bring myself to register officially; I imagined scenarios in which we were turned away, one more vivid than the next. In the end I forced my husband to come with us for the first class, to register on the spot; if we were going to be rejected, we’d all be rejected together. I don’t know how I had become so sensitive, but there it was.

So imagine my surprise: we show up on the field and walk up to the coach in my most submissive, hat-in-hand approach. I begin to launch into my “I was just wondering if it would be ok if…” speech when the coach smiles, grabs my son’s hand, and says with total friendliness, “Sure, no problem. Of course he can join us. See you at 4.”

It turns out that his daughter has special needs too, and she was in my son’s class when he still attending public school in our town. I guess success must breed success, as the old adage says, or I wanted to test my luck, because I took this as a sign to make a bold move.

For months I’d been dreaming about getting my son into the after-school program at my daughter’s school a couple of days a week. It would be a great socialization experience for him. (Why is it that special needs kids “have socialization experiences” but other kids “make friends”? A post for another day.)

Every time I thought about the idea, I imagined a reason it wouldn’t work. Legal reasons mostly, but really it was fear of rejection, plain and simple. Bringing it up with other advocates, friends and colleagues, they shot the reasons down, one by one. The clincher came when my two co-workers lovingly baited me: What have you got to lose? Stop being so afraid.

I left the office and headed to my daughter’s school. I mustered up the courage to swing by the after-school office and talk to the young man who administers the program at our site. I coolly mentioned that I’d be submitting an application for my son to join after-school a couple of afternoons a week next fall. I was about to launch into a speech assuring him that my son’s PCA would be on hand, he interrupted me.  His eyes lit up. “I often wondered when your son would join us. I was even thinking about how we could get it to work. When you submit the paperwork to the main office, please tell them that I’m totally on board. This is important for our program. I want ours to be the kind of place that every kid can attend.”

To those out there who have experienced rejection, grit your teeth through tolerance, wheedled and cajoled, carried the burden of making things work, I say: thank you. Because you were there, I am here. And I’m really, really grateful.

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.

“Let there be peace, welfare and righteousness”

Martin Luther King leaning on a lectern. Deuts...
Image via Wikipedia

Reflecting on Rev. Martin Luther King, Jr.‘s contribution to peace  thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth.

Let there be peace, welfare and righteousness
in every part of the world.
 
Let confidence and friendship prevail
for the good of east and west
for the good of the needy south
for the good of all humanity.
 
Let the people inspire their leaders
helping them to seek peace by peaceful means
helping them and urging them
to build a better world
a world with a home for everybody
a world with food and work for everybody
a world with spiritual freedom
for everybody.
 
Let those who have the power of money
be motivated by selfless compassion.
Let money become a tool
for the good of humankind.
 
Let those who have power
deal respectfully with the resources of the planet.
Let them respect and maintain
the purity of the air, water, land and subsoil.
Let them co-operate to restore
the ecological soundness of Mother Earth.
 
Let trees grow up by the billions
around the world.
Let green life invade the deserts.
 
Let industry serve humanity
and produce waste that serves nature.
 
Let technology respect
the holiness of Mother Earth.
 
Let those who control the mass media
contribute to create mutual understanding
contribute to create optimism and confidence.
 
Let ordinary people
meet by the millions across the borders.
Let them create a universal network
of love and friendship.
 
Let billions of human beings
co-operate to create a good future
for their children and grandchildren.
 
Let us survive
In peace and harmony with Mother Earth.

Peace.

No big whoop?

The special needs blogosphere and social media outlets are abuzz about this recent Target ad featuring a boy with Down Syndrome. This kid is cute. Really cute. It’s great to see him there.

The big news isn’t the fact that he’s in the shot; what people seem to be focusing on is the fact that Target didn’t make a big deal about it.

I wonder, though, how they could have “made a big deal” if they wanted to. Send out press releases? Add a little arrow pointing to him with a label, “Check it out, we’re really cool”? I don’t think so. They didn’t make a big deal about it because simply including him is a big deal. Enough said.

I don’t mean to sound cynical. I am glad to see all kinds of people portrayed in media, there not because they’re a token representing a particular slice of the market, but because they’re just there. And if it gets folks talking about and encouraging true inclusion (like this great post by Shannon Dingle about the ad and creating inclusive religious communities), then I’m definitely satisfied.

We can celebrate this milestone. But let’s not say that we’re done, OK?

Here’s how we’ll know when we’re done: when all children are included, not only in photo shoots but in schools and communities and in real lives all around the world, when no one makes a big deal about it, and no one needs to point out that we didn’t make a big deal about it.