Essential reading

I've been thinking a lot lately about Harriet McBryde Johnson, a lawyer, author, and disability rights activist who died in 2008. I've been reading her excellent autobiography Too Late to Die Young, and seeking out her other writings to help guide me in striving to raise my boy to be a proud trouble-maker following in her tiretracks.

I imagine I'll post more thoughts on her writings and perspectives later, but for now, just two things:

First, I suggest reading her "Unspeakable Conversations" essay from the New York Times magazine in 2003. Here's the official link (subscription required) http://www.nytimes.com/2003/02/16/magazine/16DISABLED.html.

This essay comes out of well-known debates she had with philosopher Peter Singer. I read a good deal of Peter Singer's writings long before ever having a connection to disability issues, and it's wonderful to read Johnson's treatment of some of his most controversial philosophical positions. An interesting note is that Peter Singer came to respect and like Harriet Johnson a great deal and wrote an obituary for her after she died.

Second, I just have to share one of the most wonderful lines from Johnson's autobiography:

"When I die, I might as well die alive."

Rockin' out

I sit here as my daughter hits the auto-song function on her electronic keyboard (piano practice is over) and is dancing furiously to the jazzy tune that is blasting from that cool device. My boy is loves it -- "come on you guys, get up and dance" he yells to us. "Mommy, dance!" ... "Daddy go ahead and dance!" he insists as he cuts quite the rug himself, sitting in his chair in the dining room.

He insists on dancing from his seat in the dining room for two rounds of "rockin out", but I finally convince him to join us in the living room for the third and fourth rock-outs.

The Axis Dance company (http://www.axisdance.org) ain't got nothin' on us.

Of bathrooms and parking lots

We're far from a barrier-free world...a long way from achieving the Dream of which I wrote in my last post. But, thank God for the Americans with Disabilities Act. I cannot imagine navigating through the world with my boy in a pre-ADA world. What in the world did people who use wheelchairs do before sidewalk cut-outs and accessible entrances to businesses, airports, libraries, and museums? I think often of the disabled ADA activists who literally crawled up the U.S. Capitol steps on the run-up to the passage of that great civil rights law to demonstrate why it was so sorely needed.

Thank you, thank you, thank you to you all. Thank you to Republican Dick Thornburg and Democrat Ted Kennedy who were both instrumental in that landmark law.

Accessibility issues never really entered my consciousness until having a
child. And then, it was only to note how great sidewalk cut-outs are when
pushing a stroller. Now, of course, I think about accessibility every single day. Obviously, when I¹m with my boy, I have to search out the elevator at the mall, choose a route to the grocery store with cut-outs, and find a van-accessible parking space. But, it's also with me when I'm without him. I find myself noting whether or not my boy could get into whatever shop or restaurant or office I'm visiting; being really happy when a simple ramp makes a whole establishment accessible (and not just the foyer); and realizing that I'm not going to buy anything at that little boutique after all because my boy couldn't get up the step in front and through the door.

There are two particular components of an accessible world that I rely on and need almost every time I'm out with my boy--a disabled bathroom stall and a van-accessible parking space. Both can generally be found most places ... it's actually really great that nearly every public restroom has one larger stall that can accommodate a wheelchair and that blue curbs and disabled parking spaces are commonplace.

But, just because they're commonplace doesn¹t mean they're available to people who really need them.

Let's talk bathrooms. I've always liked the disabled stalls. Long before kids, long before thinking I'd ever have first-hand experience with disability issues, I took advantage of those large stalls. First, they¹re great when you need to change clothes--like at the airport when you desperately want to get out of the business suit and into jeans for a long flight. Second, they feel a bit more private than the other stalls, which is nice. And third, if you have a young kid with you, it's a lot easier to help her/him when there¹s space to turn around.

I always figured that if the large stall is empty, no harm in going ahead and using it. After all, I'll be done soon enough and the chances of a wheelchair-user needing it at the same time is low. I have learned, though, how wrong-thinking that was. Because so damn many able-bodied people think the same way, the large stall ends up being the first one taken -- the on most often used -- and therefore the one least likely to be free when someone really needs it.

At first, I totally understood that people-by and large-mean no disrespect or thoughtlessness in using the big stall. And I know that's true. But when a 3-year-old needs to pee, he needs to pee. And it is back-breaking, as well as completely lacking in privacy for my boy, to have to transfer him from his powerchair outside a little stall onto the toilet in the little stall.

So, I now have a routine. If we go into a bathroom and the big stall is occupied, I'll look underneath to check for a walker, or crutches, or a wheelchair. When none is there, I'll say something like, "Well, dude, looks like someone is using the only stall that will fit your wheelchair, and all these empty ones out here are too small, so we'll have to wait for him to finish" in a loud (albeit friendly) voice. That usually results in a quick flush and a hurried exit from the able-bodied big-stall-occupier.

I also tell this tale to everyone I know so they will remeber to use the little stalls and keep the big one open for those who need it.

Parking is another issue. Unlike stall-users who, I think, just don't think about whether someone might need the space, I consider disabled-parking abusers by and large selfish, callous, and rude. Well, I guess there are different types.

First type: the "I'm just waiting for my friend and will pull out of it anytime someone needs it." Okay, I know that may not seem completely unreasonable and you don't mean to be rude, but if you think for a second, you'll realize that: (1) if it appears that all the spots are taken, someone who really needs one likely will just keep driving around looking in vain for a spot; (2) people with physical disabilities aren't really able to stop, get out of their car and ask you to please move; and (3) disabled only means disabled only, damnit!

Second type: the "I have a disabled placard even though I don't really need it." Okay, maybe you can't really tell from seeing someone spring from their car and run into Macy's whether maybe they really have some hidden disability (such as a legitimate medical issue like pulmonary disease, etc.) and do need that spot. But, come on! I can't count high enough to keep track of all the perfectly-able-bodied-appearing people who have taken spots I need to unload my son from the van. I know, I just know in my heart that a huge number of people with disabled placards don't really need them and are just abusing the system. And, I'm sorry, but elderly does not necessarily equal disabled. My parents are pushing 80 and they park in steerage just like everyone else because they can actually walk through a parking lot and don't need space to unload equipment. Able-bodied people of any age need to leave the spots for those who really need them.

Third type: the "sack of ----." This is rare, but happens. People with no disability and no placard take up a disabled parking space because they are too lazy or too selfish or whatever to deal with parking like everyone else. They need to have their cars towed and sold at auction to fund disabled services for the city. Once, we even had a car park in the cross-hatch of a disabled spot--making it impossible to open the side door of our van and deploy the ramp. I've never wanted to slash a set of tires more in my life (of course, I didn't). But such selfishness really is enraging.

Also in this category are people who fraudulently get a disabled placard. See this enraging recent San Francisco Chronicle story about abuse of disabled placards: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/03/26/MNGOLORI7C1.DTL&hw=placards&sn=001&sc=1000. It focuses on the loss to the city of parking fees. I think I remember a Dateline piece some time back where they approached people who had placards, but looked very suspiciously able-bodied.

Speaking of cross-hatches -- people put all kinds of stuff in them. Shopping carts are the most common thing, but also stores leave empty pallettes, and once a moped parked in one next to my van...again making entry and exit impossible for my boy.

Okay, what's the point of this rant? I don't know, but it feels good to rant sometimes. Seriously, I am convinced that most of these offenses are simply out of ignorance and that we need a public education campaign letting people know that those stalls, those spots, those sidewalk cut-outs that people stand in all the time, exist for a very specific reason and that the able-bodied need to just keep them open. Even if it seems silly, even if it seems unlikely that anyone within miles actually needs it, just leave it free and clear because when someone does need a van-accessible space, or a large bathroom stall, or a sidewalk cut-out, they really really need it.

Oh, a ticket for illegally parking in a disabled spot should cost at least $1,000 for the first offense, $5,000 for the second, and on the third you should have your license suspended for at least one year.

Unless it's a Lamborshini Countach like the one in the picture above (found on the blog http://infospigot.typepad.com/infospigot_the_chronicles/2007/03/powerful_sports.html). This car parked outside a library in Berkeley, California actually had a placard hanging on the rear-view mirror, but boy one wonders. It's hard enough to climb into a sports car as an able-bodied twenty year old, so it's hard to imagine someone with a true physical disability would drive such a beast. If the placard for this "supercar" was not legitimate, I'd want the car seized and auctioned off and all money given to disability rights groups or other non-profits that serve people with disabilities.

The Dream continues

Ben Mattlin has a wonderful piece in last Friday's USA Today about the lessons of Martin Luther King and disability rights (available here: http://benmattlin.blogspot.com/
and at the USA Today website here: http://blogs.usatoday.com/oped/2010/01/column-disabled-owe-personal-debt-to-king-as-well-.html#more).

As the family listened to some of Dr. King's speeches yesterday (a yearly tradition), I couldn't help thinking of how his words still resonate not just for racial justice but also to disability rights. And, indeed, to so many politicians and pundits of today who suffer from the same "high blood pressure of words but anemia of deeds" against which Dr. King warned in his "Give us the Ballot" address.

We couldn't listen to "I Have a Dream" as a family, because my girl's class is listening to it today in school and she insisted on waiting to hear it with them. A demand to which I happily acceded.

But thinking of Dreams of the sort imagined on the Lincoln Memorial steps that day in '63, made me realize that my Dream for my boy is not that he no longer need to use a wheelchair, but that it not matter one bit that he does...

...that no store will have an entry step that poses an insurmountable barrier

...that every playground will have ramps to the top of every structure so that all may play and reach the same heights

...that all new homes and buildings will incorporate universal design

...and that my boy not have to endure the stinging stares of curiosity and the caustic comments of ignorance.

My Dream is a barrier-free world and a consciousness of disability that does not victimize or pity, but understands and respects. Seems a long way off, but I'll bet few in 1963 ever dreamed there would be an African-American president elected less than half a century later.

Unconditional love

Wow. I sit here with a tear rolling down my cheek. I'm not sad, I'm just so touched and happy and amazed at the love one person can feel for another. No, not me loving my boy (well, of course, I do, but this post is not about that). I'm talking about the unconditional love of an adoring sibling.

See, my boy has an older sister. She's six. She's a typically-developing spit-fire. She can be quite a handful, but she's also the most loving, caring, amazing little human. Here's what just happened...but first the background. My kids share a room. Their beds are along opposite walls from each other. When we tuck the kids in, we always pull up the covers and give them kisses. My girl won't get to sleep unless she has at least a sheet on her (just like me...I need at least some covers). My boy can't pull his covers up because of the muscle weakness from spinal muscular atrophy. Thus, we always pull up the covers and tuck them in.

So, it's been a really great day so far. Took the kids to a museum, saw a great mummy exhibit that they thought was really cool, took the boy for a much-needed haircut, and played Sorry and Zingo as a family before bedtime. They were really tired by the time teeth were brushed, pajamas were on, and books were read. And when they're over-tired, they don't want to sleep. And when they don't want to sleep, they don't want covers on. So, the wife and I just told them goodnight and turned off the lights without covering them up. So be it -- my girl can pull her own covers up when she's good and ready, and I can go in after my boy has fallen asleep and cover him up.

Flash forward 15 minutes. I tiptoe into the kids' room and...my boy already has his covers puled up perfectly and is sound asleep with the most peaceful look on his face. My girl is still awake and tells me -- "Daddy, I waited until he was asleep and then pulled up his covers."

My heart melted. I never asked her to do that. Never suggested she do that. Never even mentioned I'd come back to cover him so he wouldn't be cold. She just did it all on her own because she loves her little brother and wanted to take care of him. I cried when I told my wife. How amazing is she? And, she does little things like this for her brother all the time. She loves him beyond anything I've ever seen. He is blessed to have her.

And I'm the luckiest Daddy in the world to have them both in my life.

Just not fair

So, I'm on a cross-country flight and they show this interesting documentary that brought together Jack White (of the White Stripes and now The Racounteurs), The Edge (U2, of course), and Jimmy Page (Zepplin, natch) to talk about playing the guitar, their unique styles, influences, etc. It was pretty compelling and really gave me an increased appreciation for White. I have been a fan of White Stripes for quite some time, but now I understand his influences in southern, bare, rough blues and see how they led him to create this very spare, honest sound. Luckily, I had my iPod with me and could listen to all the White Stripes music I have in the isolation of a tin can hurtling through space and noise-canceling headphones.

Okay, so that was pretty cool. And, it made me think of my boy, who is a huge music fan. And, for a 3 (now 3-1/2) year old, he really has definite tastes and preferences. Blue Note era jazz -- wonderful; Pearl Jam, Green Day, Wolfmother, White Stripes -- great "rockin out" music as he calls it; 80's new wave -- usually likes it, calls it "Squeeze music"; The Beatles -- he has yet to develop a taste for them...oh, but he will...yes, he will. He has of late developed an unfortunate (in my view) appreciation for a current Miley Cyrus hit, but he is 3 after all, so that can be forgiven.

Anyway, all this led me to think about how he'll never be able to play the guitar. I don't know that he'd ever want to, but watching those three incredible, innovative musicians, and their love for music and drive to create something of their own, I can imagine my boy would have the drive to do the same. But, he'll never have the strength to really hold a guitar, much less mash down the strings. And that just sucks. I try my damndest to think -- "So what? He can appreciate music, he can maybe even play an electronic drum set for kicks" -- but sometimes the unfairness of it all overcomes the sunshine attitude. And, sitting on that cross-country flight, alone (in the real sense at least) and in the dark, I could not escape the reality that it is just not fair.

So, readers (if there are any), this life is not all wine and roses.

Thanksgiving thoughts

Okay, it has been far, far too long since I posted anything new. Sort of like joining a gym and going for the first couple weeks but then never getting around to it. I don't want this blog to become a virtual Bally's Fitness, though, so I will have to be more disciplined. Now, on with the show...

It's two days after Thanksgiving. This is the second Thanksgiving since my boy was diagnosed with SMA. The second Thanksgiving with him using a wheelchair to get around. This year, though, he has his powerchair--a wonderful machine that enables him to run around with his older sister, go where he wants to go, explore on his own, and even get in trouble sometimes. This year, I'm thankful for Permobil (the company that makes his powerchair). I'm also thankful that we're healthy. Big sis recently had a nasty, lingering cold, and both Mom and Dad have been under the weather this Fall/Winter, but my boy has been sickness-free (knock virtual wood). We're all seasonal and H1N1-vaccinated, and citrus plays a prominent role in many meals.

More about Thanksgiving. Well, it was Thanksgiving 2008 when I had a real epiphany. My boy was diagnosed with SMA in February 2008 and by November, I was back to work, our family had settled into a routine of therapy appointments, specialist visits, and the sort. Life felt pretty normal again--the new normal at least. But, there was still this lingering sadness within me. I was still mourning my vision of what might have been, the father-son activities I always had in my head but now I thought were impossible because of my boy's muscle weakness, inability to walk, etc. I had overcome the profound shock, grief, anger, resentment and whatever other typical stages of grief or loss may be, but I was not yet to acceptance. I still thought of my boy as someone who had been unfairly inflicted with a life-threatening, debilitating disease. I saw the disease as something that had happened to him and wished so much that it hadn't.

Then, we were sitting around the Thanksgiving table with family and dear friends. Everyone was going around and saying what they were thankful for. I knew I had plenty of blessings to recognize--a roof over our head, plenty of food, a loving family. Despite the pit of sadness that dwelled deep down, things were okay. But, as we went around the table and everyone said their piece, it came to my boy. What was he thankful for? "Hot coffee." It was one of the funniest things I'd ever heard and the whole table erupted with one of those laughs that had to do not just with the joke at hand, but with all the underlying emotion of the day/the moment/the year that had been. My boy -- not yet 2-1/2 years old -- was laughing hysterically. He knew he was making a joke-and a good one at that. At that moment, one friend at the table (a great dad in his own right) said he was thankful that my boy was always the happiest person in the room. And it's true. His disposition is just joyous. He's funny, he loves playing with toys, he's inquisitive, he thrives.

And then it happened--the sadness lifted. I stopped seeing my boy as someone inflicted with this terrible disease. I no longer thought "if only he didn't have SMA, he'd be able to...". I realized that he is who he is and SMA is part of that. If he didn't have SMA, he'd be a completely different person. That's a biological truth, but it's also a metaphysical one. He's not my boy with a disease, he's my boy, disease and all. It's part of who he is. And, it's now a part of who I am, who my wife is, who my able-bodied daughter is. It's not an affliction, it's a part of humanity's biological diversity. Yes, it still sucks. I'd still love for a cure to be developed. I still fear for sickness, pneumonia, further physical deterioration, scoliosis, and a host of other things. But, I don't think "what if" and I stopped thinking that "we can't do X, Y, or Z." Instead, the calculus is "how can we do X, Y, and Z." And--guess what--we can do A, B, and C, that we would never have done otherwise and that we never would have even thought about. Full disclosure--I'm not always in this good place. There are still dark moments when I can't really catch my breath, but they are few and far between--and my outlook, my paradigm has shifted.

So, what about Thanksgiving 2009? I have even more to be thankful for. My family is tight, strong, loving, happy, and healthy. I went to see the movie Precious last night. It was another reminder that so many people live with such profound challenges, survive through adversity, and really did draw the short straw in life. Thank god, that's not the case with my boy. My boy is someone living with a disease called SMA. He's someone who uses a wheelchair (he's not "in" a chair, he uses it...it is not what defines him). He's also valued, hugged, read to, sung to, and surrounded with love. I wish all kids were so lucky.

Happy Thanksgiving.