We’ve been away, having adventures in the warmth. The south of England feels almost tropical to us pale, rain drenched, folk.

I didn’t need a coat. We finally got the air conditioning fixed in the car. We sat outside in the garden, under an umbrella. I needed a different sort of umbrella this morning. Belfast is wet and soggy and downright chilly. Ignoring the calendar, I’ve put the heat on.

I wonder where my warm socks are?


the parade, the party, and the recovery

It’s been a week and a half, this week. I think I may be coming round, but I can never be sure.

Disability Pride was a glorious, fun filled, smiley celebration in Belfast on a sunny Saturday. Hundreds of people paraded, danced, sang and wheeled their way up the main street and gathered in front of City Hall. Hundreds more joined in the concert, the singing and dancing. and the smiling. All the smiling. People who don’t often make it to the city centre. People who aren’t often encouraged to be there, or to use public space to celebrate who they are. It was a wonderful event, and I’m delighted to have been part of it.

Several of us had to run away early though. No tidying up of leaflets for us, or untying banners. We had glad rags to find and faces to draw on. Accidents of timing and geography meant that we had been invited to the Lord Mayor’s Installation Dinner celebrating the Best of Belfast, the unsung heroes and the forgotten citizens. I felt a little guilty being in that company, but also, I was honoured. A vast, swanky hall, 400 people in finery, beautiful food. Like Disability Pride, it wasn’t simply inclusive, it was embracing. And the Lord Mayor’s daddy made me cry.

glad rags, westie

I’ve been in bed a lot since then. Apart from the very long meeting to prepare for a presentation, ticking names off a list at a research event, spending some time on my online course, and arranging a spot at another conference (on the same day as the presentation). Spurs Fan is rolling his eyes in well experienced despair. Less pacing; more boom and bust. The booms make the bust bearable.

Disability Pride and all that

Even without a job to juggle, my diary fills up in random spots. I have 2 confirmed events for 2015, both on 22 April. Of course.

I was due to go to Dublin tomorrow, but the event  time was moved to 8am. Patient involvement in event design still has a way to go. Last night, I was offered a lift and was so tempted to take it, but Spurs Fan advised caution. He looked at the bundle of banners at the foot of the stairs and wondered about Saturday.

Um, yeah. Saturday.

Disability pride promotion

Disability Pride hits Belfast. A family festival to celebrate diversity in society and all people with disabilities. There’s a parade, concert, information stalls, retail tents, wheelchair fixing station, all the fun. NI Rare Disease Partnership (where I come in) have organised buses and livery for the parade and a stall. Overall, there will be hundreds of people walking, wheeling, dancing, wobbling or being bussed through the city centre, partying. The girls are preparing to spend Saturday afternoon (or at least 10 minutes of it) helping out at the rare disease tent. I’m not organising this event, but will be there all day, doing something with the banners, ticking people off lists, and looking for a seat. I’ll be celebrating, having fun and being inspired by the awesomeness of other people.

That’s a lot, but it’s not all.

A few weeks ago, Belfast Lord Mayor Nichola Mallon completed the ice bucket challenge for MND and other rare diseases, and then had us in for tea. Tea and nibbles in the parlour, chatting about who we are, what we do, how she can help.

Obviously the Lord Mayor can’t get enough of us, because the Belfast City Council based people from the parlour ‘do’ have been invited back, to the Installation Dinner. A fancy dinner in the City Hall, invited by the Lord Mayor. Get us. Of course it’s on Saturday night.

Can I potter in, grubby, smelly and carrying banners from the day?

Can I stay awake when I go home to get washed and changed?

Will I fall asleep in the soup?

And, does ‘Dress: lounge suit’ mean dress for going to a wedding, or a cocktail/ formal type frock?

preparation for student life

I lived in a small town in the west. We had fields behind, a lake in front, lakes all around. Far enough from the border for it not to loom, close enough for it to be an everyday reality. Regular life in Northern Ireland in 1982.

But changes were ahead. I was planning on going to university. I didn’t know any students. Past pupils from my school came home at Christmas, smug and worldly wise, too busy being grown up to discuss their new lives.

I’d intended to go to England, but wasn’t brave enough to head away into the world on my own. Belfast was far enough.  I’d never stayed there overnight. Belfast was scary, but at least my accent would be understood there, and I could go home anytime I wanted. Small steps.

We all prepared for my student life together: Herself, the Old Man, the Brother and I learned everything we needed to know from TV. We laughed and winced and cringed and learned a whole new vernacular.


Rik Mayall died yesterday. Thank you, Rik for all the family fun.*


*not “family friendly”