Spinal cord injury support group meetings are unbearable. They are typically one hour, once a month, held at a hospital, and run and organized by staff who have never had a disability. The format is not honest discussion among those with injuries (as implied by the words SCI, support, and group), but rather a presentation of some sort, typically given by local businesses who cater to my people, and is, at best, free marketing. We are to be appeased, though, by the presence of soda, chips, cookies, and – if you ask nicely and can bear the eye rolling – day old coffee can be obtained from the nurses’ station.

Within two years of my accident, I was working with a disability organization on the national level – the National Spinal Cord Injury Association – writing for their monthly newspaper and doing communications. By 2008, I decided to start something on the local level, and felt peer support was the area in which I could make the most difference on the Nashville scene. I founded a Tennessee chapter of the NSCIA (the TSCIA) with only one goal in mind – taking SCI support out of the hands of the hospitals, to claim it for ourselves, and to do something truly fun, out in the community, once a month.

But the Nashville SCI community is notoriously resistant to change, something I have never understood. In early 2009, I requested the opportunity to present my idea at Vanderbilt’s monthly support group meeting. This is the group that really constitutes the SCI elders in Nashville, with whom I have had difficulty in the past. Others come and go, but there are three guys who have been around the longest, been injured the longest, and meet with this group religiously. We will call them Adam (25 year SCI veteran), Ben (20 years), and Chris (15+ years).  

They have consistently and solely been Vanderbilt’s go-to “peer counselors” and the only ones who get called to speak to new patients. They have a lot of pride of ownership in this, and I was seriously stepping on their territory with my plans and ideas. It did not help that I was, at the time, a relative SCI rookie, nor did it help that I have a vagina. And because I can stand and walk, I’m never quite disabled enough to be trusted.

My presentation went as planned, no problems, and I felt good about it. Everyone seemed to be really excited about it – except for these three, whose faces showed, at best, disinterest and, at worst, condescension.

When I opened the floor to questions, I braced for the impact of “no”. It wasn’t so bad at first, but as the discussion continued, there was a strange migration in the room, so that the four of us were on one side, and everyone else sat to the other, quietly watching. And the negative onslaught began:  

“You don’t understand the people who live in these rural areas…”
“It’s virtually impossible to get some of these people out of bed from behind their closed blinds…”
“Your ideas sound good in theory, but…”
“We’ve been doing this for years, and I just don’t know how much more can be done…”
(And my personal favorite:)  “No one’s ever heard of the TSCIA. We need to wait for Vanderbilt to start doing something. Then we have some name recognition…” 

So, here I am, sitting in front of the old guard SCI triumvirate. And I tried battling these issues one by one for almost 30 minutes before I realized, this is a territorial pissing contest!

I have observed over the years that whenever three or more men gather together, there always emerges an Alpha male. So I let them talk, and I just watched. Chris was easy to figure out – he deferred to the others, and did a little flirting with me. Ben was a little more difficult to read – he tried to play the independent, lone wolf (and was also the most negative of the three, who actually wheeled away when I was in the middle of a sentence, a sure way to piss me off). But when it came down to it, Ben took his cues from Adam. Adam was the Alpha.

I had been leaning back in my chair, with my foot up on the table (oops, that’s just flaunting…) and my hand in my hair, almost literally pulling it out, until I had had enough. I sat up and waved my hand to put an end to their bitching.

I said, “I’m ready to do this – now – and I’m not waiting for Vandy to miraculously decide to do anything for us. They don’t have a dog in this fight. How long have you been waiting, Adam – 25 years? I’ve been waiting 4, and I’m done with it. I can do better.

“I have zero desire or intention to drag people’s asses out of bed from behind their closed curtains to watch a movie with me. Frankly, I don’t want to listen to them bitch the whole time. I’m talking about people who are ready to be active, ready to be engaged, ready to have fun, and just don’t know where to go.

“Screw everyone else for a minute. Is this what YOU want? To come once a month to a hospital, eat some cookies, and listen to some schmuck give a boring PowerPoint presentation? Because it’s not what I want. I’d love to have your help, but I don’t need it, and I’m not going to wait for it. If you’re not on board, have fun next month talking about wheelchair suppliers and the latest caths on the market. I’ll be at a baseball game.

“Look, I get it. You’ve been injured longer than I have. You know the Tennessee spinal cord injury landscape better than I do. And you will always have more experience at this. But you know what I have that the three of you don’t?”  I leaned forward, looked Adam directly in the eyes, raised an eyebrow, and said firmly:

“Balls.”

Who’s the Alpha now, bitch?

 

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