and now for the legal bit

It was a proper legal thing. A Human Rights Inquiry.

I was dreaming about it- and not in a good way, more in a wake up in a cold sweat sort of way.

I had armour (Kileen’s hand me down heels).

I had war paint (Claudia Winkleman is my eye makeup role model).

I was totally hyper andjustkeptontalkinginthecafebeforehand.

Then a phone call: would we like to be interviewed for local TV about rare disease? Of course we will. AAAARGH. What did I just agree to? What will we say?

We agreed key messages.

We were asked totally different questions. This meant thinking on the spot, on camera.( I haven’t seen what, if anything was broadcast.) I have no idea what I said, but I managed to get one of our key messages in. FM- our leader for the day- is experienced, calm and measured. We needed her.

The Inquiry was running late, which meant we got to watch others give their submissions. Calm, articulate, moving stories. All being recorded on video and by a court reporter.

Eventually it was our turn. We had name plates and water. We introduced ourselves, and I should have realised that I needed to calm down when I struggled to say ‘Progressive Supranuclear Palsy’. Why could I not remember about the deep breathing and happy place stuff when it would have been useful?

FM made our brief presentation. We were ready for the rest- they’d told us what questions to expect, and we had all the answers. We had all the answers prepared and written down in front of us. We may have been anxious, but we were the most prepared people in the building. We had this thing sussed; all we had to do was relax into the flow of it.

They asked different questions.

smiling giraffe, baffled

FM struggled to get a word in as @imonlyslightly and I seemed to believe we were taking an exam and, as is traditional, the question mattered less than our determination to tell everything we knew. We hardly drew breath- a result being few questions. They practically had to throw us out, still talking about the inequalities of rare disease, and patient and family expertise.

The commissioners retired to a darkened room for a tea break and we left, burbling all the way.

The court reporter is the one I felt sorry for.

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7 thoughts on “and now for the legal bit”

  1. My sister told me you were on last night, reckons you spoke really well, also quick glimpse of the panel, no glimpse at all of the front page of the report. May be repeat showings.

  2. I wonder if it’s possible the broadcast could be accessed on the web. You might at least check with the local tv channel. Maybe suggest that you’d like a copy to share with your advocacy groups. You never know. And I’m thinking you were probably much more articulate than you think. You know the topic backwards and forwards and even babbling is probably informative. I’d have been nervous, too. I think you’re going to be called upon to do more and more of these interviews…it will undoubtedly get much easier!! 🙂

  3. Catching up with the many things you have been involved in. I do hope that your interview is on the web somewhere. If not, just keep going even when the wrong questions are asked. That’s the nature of people coming from outside the perspective, from their own framework, your replies will get through.

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