The Main Problem with Disability is it’s Such a Conversation Killer

Drew Hays via Unsplash

This week, I came out of the closet. I’m one of the 15 million people in the UK with a chronic illness. In my case, the issue is Multiple Sclerosis (unreliable brain networking with the symptoms you’d expect in a data centre — except in my nervous system ;).

I’ve had MS for nearly 10 years and I usually don’t talk about it because a) complaining about your health is socially disastrous and b) it always felt like potential career suicide. However, last week I had a relapse and I missed a conference talk I was due to give in Germany. The conference organisers were very supportive but I felt I had let them and the attendees down.

So what should I do about that? I reckoned I had 3 choices.

  • Say nothing and continue as before. I’d probably miss a few conferences, but c’est la vie. Let’s call that the “President Bartlett” option.
  • Drop out of public speaking entirely and disappear off the face of the earth in order to avoid ever disappointing anyone. Let’s call that the “Bruce Banner” option.
  • Be completely frank about my health. If people still want to invite me to talk at conferences that’s fine. If not, that’s fine too. Let’s call that the “Potential Career Suicide” option.

If you’re reading this then I went for option 3 (or I accidentally hit publish when I meant to hit delete — that’s the kind of mistake we puny weaklings often make).

What was my reasoning?

The President Bartlett option is a fairly easy position to fall into, it’s very “Lean-in”, Sheryl Sandberg would approve. But “lean-in” primarily applies to confidence issues. Maybe if self-confidence is not the underlying problem, leaning-in is not the optimal tactic — it’s making my problem someone else’s crisis. I’m not averse to that ;-) but it isn’t 100% fair if I haven’t asked them.

I seriously considered just removing myself from the conference scene. There’s an argument that only super-healthy, high-availability folk should speak at events because it’s hard to manage last-minute dropouts. However, that would exclude not only sickly people like me but also be a problem for women with kids or anyone with carer responsibilities. It’s also failing to give conference organisers any say in the matter, which feels high-handed (and defeatist).

The final option is just to put all my cards on the table. Also, check my privilege: I’m surprisingly well for someone 10 yrs into active MS (I can pass for healthy). I have a flexible skill set. I have a very supportive husband, family and friends — I’m not going to starve. Therefore, I can afford to take career risks that other people couldn’t.

So here are my cards

  • I have a chronic and unpredictable neurological disease.
  • Most of the time I’m fine but sometimes I get network problems in my central nervous system that cause data transmission failures and/or congestion. Congestion makes me very tired. This network damage is from a faulty immune system response to random, innocuous stuff like cold & ‘flu viruses or bread (! I know).

Stats for conference organisers: I signed up to 12 talks in the last 12 months and missed 3 (i.e. a 25% failure rate). Two very kind women in tech (Liz Rice and Paula Kennedy) stepped in to expertly cover two of the missed talks.

Frankly, it’s a pain in the arse. However, I’ve learned a lot from it.

  • In a crisis, people and relationships are way more valuable than money.
  • We take loads of day-to-day things for granted like seeing stuff, touching stuff, just walking around. These pedestrian things are really good. TBH I’d rather eat a sandwich than own a Porche ;-)
  • People don’t talk about illness because it’s such a conversation killer, by which I mean it’s socially awkward, but s**t happens. If someone is grumpy maybe it’s not you, maybe they’re worried about something or feeling rubbish. Give them the benefit of the doubt — it almost always pays off and it’s the right thing to do.

When it comes to my or any disability the clue is in the name. It makes life harder, not impossible but more difficult. Not just for me, it’s cumbersome for my colleagues, friends and family. Generally though, people are kind and very willing to help and I’m hugely grateful.

That’s another thing not to take for granted ;-)

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SciFi author interested in tech, engineering, science, art, SF, economics, psychology, startups. Chaotic evil.

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