Saturday, June 17, 2017


One of my biggest goals in leading the Disability Employee Resource Group at work is to personalize the disability experience and empower other employees with disabilities to come forward and support one another. One of the ways I attempted to do that last month was to share disability Point of View videos like this one. That inspired me to put on a bike helmet and GoPro camera and produce my own POV video (below; it's about seven minutes long). If you're reading this, there isn't much that'll be new to you, but it was fun to try and tell my story in a different way.

Sunday, June 04, 2017

Damaged Goods

I started this last February, offline, but wanted to pick it up again...

I’ve written about this before, but nothing is a harsher reminder of the burden I place on my family than a snowbound, power-out day. No electricity means no heat and no water (the wonders of being on a well).

The screams of frustration from Jamie and the boys, who are trying to at least clear the snow from the walkway, the top of the drive, and the edges of the roof (ice dams are laying in wait to pry under the shingles and leak come spring) rattle around my echo chamber of a brain, reminding me that it’s my place to be suffering out there with them, instead of sitting in my pajamas, stoking the wood stove and lamenting my fate (that too feels like a luxury).

On a similar note, out of the blue I received a letter from the  Bureau of Motor Vehicles requiring me to have my doctor sign off on my ability to drive, despite the fact that I’ve had my license back for four years without incident and nearly five since my last seizure. I’m sure it’s all standard protocol, but nevertheless screams that I can’t escape the perception that there’s something “wrong” with me.

Interesting, too, that this all comes as I embrace myself as a person with a disability and try to advocate for and support other disabled employees at work. One of the biggest challenges there is finding people who will  self-identify that way, either because of the stigma they feel is associated with the label or an unwillingness to let go of their “normal” identity. I understand both of those perspectives: Becoming disabled can happen in seconds. Living with a disability is a learning process that takes years, not unlike mourning the loss of a loved one, except the loved one is you. Even though I’ve grieved and moved on in many ways, I can’t fully escape that other guy, nor can the people who love him/me.

Oh, and have I mentioned that the lice outbreak in our house a couple weeks ago has suddenly reared its ugly head (pun intended) again this weekend? One more barrage of things for Jamie to deal with (buzzing hair, washing and drying every piece of cloth in the house) and blame herself for (obviously, she isn’t responsible for their existence but is responsible for their extermination, because I’m of no use in the process). Lice is a lot like disability, in terms of that inaccurate social stigma (lice=dirty; disability=weak and looking for special treatment).

And it just happens to be my birthday. I thought I’d had my mid-life crisis at 40 by having a stroke but have actually found 47 harder in many ways. It’s the confluence of getting older, feeling like I still have a lot I want to accomplish, and having little energy to commit to any of it.

Jumping ahead to the lovely springtime of early June, I'm happy to report that we survived the power outage, the lice are gone, and I'm well on my way to empowering more employees to embrace their differently-abled side (gotta find a better turn of phrase for that -- re-abled? abilified? super-compensatory?). 

One of the perks of working at a disability insurance company is that they recognize the value in disability perspectives. Jamie and I had the opportunity to take a trip to Florida at the end of April for a disability conference, May was very actively recognized as Disability Insurance Awareness Month with a panel discussion about life as a claimant and an experiential learning event filled with disability simulations, I flew solo to Tennessee (first time since the stroke) to tell my story and plans to the Board of Directors, and I drove solo to and from Providence to celebrate my 25th college reunion. We're no spring chickens, but we partied like it was 1989 (except that in 1989 I didn't party).

Needless to say, the year so far has nicely emphasized what I can do and what I've gained from the past seven years, not what I can't do or what I've lost.