Dyspraxia Foundation AGM and Conference 2019

Yesterday I went to the Dyspraxia Foundation’s AGM and conference in London. The sun was shining when I left the house and I was all set to have a great day – except for the pounding headache that painkillers had so far failed to shift.

I was really pleased with myself when I got to the venue, as I didn’t get lost once en route. Considering that last year I got so lost I ended up walking a full loop around the building, as well as visiting two other buildings in the meantime, I had anticipated needing more time to find the place! Instead I took a few minutes to gaze out over the Thames, watching the water glinting in the sunlight and a couple of kids playing amongst the water fountains, before heading upstairs.

Just like last year, I was impressed with the organisation of the conference:

  • Detailed instructions for getting to the venue – check
  • The information pack I’d requested being handed to me without me needing to ask – check
  • Being easily directed to the right place in the building – check
  • Clear signs on the rooms and to the toilets, etc – check
  • Plenty of refreshments available – check
  • Resources stand already set up to go – check
  • Wi-fi code displayed in multiple locations – check

So I helped myself to a glass of water, and settled myself in my seat. I spoke with a few people I already knew, and some I’d not previously met in person, and waited for the sessions to kick-off.

rhdr

AGM

I’m not going to lie – usually I avoid AGMs like the plague. They have a combination of ‘we’re giving an overview of the year so not too much detail’ and ‘we’re going to give you some really precise details’ that hurts my head a little.

But I enjoyed Sophie Kayani’s summary of the year and it’s good to remember that, although we will always want more, the Dyspraxia Foundation does a LOT with limited resources. The presentation of the awards was lovely and the awards were incredibly well-deserved. I was really pleased to see the helpline volunteers given the Mary Colley award, I thought that was a lovely recognition of their contribution and hard work.

A Last-Minute Step Up to the Plate

The first session was due to be a talk from Emma Lewell-Buck, MP, about dyspraxia and politics. Unfortunately she was not able to join us due to unforeseen circumstances requiring her attention in her constituency, so Sally Payne (OT and DF Trustee) stepped up to fill the space.

Sally spoke about challenging the assumptions people can make about dyspraxia. Two she spoke about which most irritate me are:

  • that it’s just clumsiness – it’s not
  • and that it’s on the autistic spectrum – it’s not. This misconception does not help either dyspraxic or autistic people, and I don’t think it does justice to the experiences of people who are both autistic and dyspraxic, either.

Sally went on to talk about the importance of collaboration. She highlighted, borrowing from Gill Dixon, that once you’ve met one person with dyspraxia, you’ve met one person with dyspraxia. Sally spoke about the importance of recognising and listening to that person (and their parents, where appropriate) regarding what they need and what helps them.

Sally also launched a survey the Dyspraxia Foundation are running, which looks at diagnosis of dyspraxia. If you have or suspect you have dyspraxia and are aged 18+, please take a few minutes to fill it out by following this link or by following the QR code on the left of this paragraph.

Living and Working with Dyspraxia

For the second and third sessions, the conference split into three strands, with a strand aimed at those (working) with children with dyspraxia, young people with dyspraxia and adults, respectively. I went to the workshops aimed at adults.

The first of the two adult sessions was on living and working with dyspraxia. I have to confess, this was so broad a title that I didn’t really know what to expect. It was interesting to hear the speaker’s experiences as a dyspraxic filmmaker shooting a documentary which followed a dyspraxic pinpall champion, and there was some discussion afterwards about challenges with getting ideas from your head onto paper and everyone being different. This included discussing the impact of tiredness and the time of day on our abilities.

For me, the pace of this conversation moved too quickly for me to process – especially with a headache and painkillers in my system – and I found it a bit hard to keep up. That said, I had the sense that the conversation could have continued for much longer that the time we had available, so hopefully that’s a good sign that others were keeping up better than me!

Lunch

I was so very ready for lunch by this point! And as a lovely bonus treat, we got to go out onto the balcony and enjoy lunch in the sunshine, looking over the Thames and being serenaded by music wafting up from the pavement below.

smartcapture

I was not as talkative as I’d have liked to me as I was pretty tired by this point, but on the plus side I could take some more painkillers (my headache, it turned out, would finally start to subside mid-afternoon). I was really grateful to be able to switch off and not have to process too much information for a while, but I’m sorry to those I didn’t get to speak to as a result.

Dyspraxia in the Workplace

The second of the adult workshops was facilitated by Laurence Turner from GMB. He spoke about the Equalities Act 2010 and the rights disabled workers have, before leading a discussion about the barriers dyspraxic people face at work and some examples of adjustments different people have found helpful.

I really enjoyed this session, I thought there was a nice balance of content and discussion and that the session was well-paced. I liked that Laurence checked in that everyone who wanted to say something had been given the opportunity.

It also meant a lot to me that the background colour on Laurence’s slides was not white – between sensitivity to bright light and visual stress, looking at slides on a white background that morning had only made my headache worse so it was a great relief not to be looking at more of the same!

Again, I felt the discussion could have gone on much longer, but I suspect that would be true no matter how long the session had been. I’m hoping this is a theme that will be picked up again at the Adult Conference later this year, but we’ll see.

Dyspraxia and Depression

Mark Robinson delivered an outstanding final presentation for the day. He spoke eloquently and courageously about his own experiences of dyspraxia and mental health, neatly outlining the vicious spiral that can easily set in.

oznor

I was really moved by Mark’s talk. His struggles came across clearly, and as far as I could tell he didn’t try to make it neater than it actually was. I sometimes feel there is so much discussion of strengths and perseverence that the real struggles can unintentionally get a bit swept under the carpet, but in that moment when Mark was speaking, I knew I was not alone. I knew that someone else understood how hard it is.

In that moment when Mark was speaking, I knew I was not alone.

Mark’s openness to speak about needing to choose to look after himself was inspiring and so, so very important. We talk about this idea that dyspraxia doesn’t stop you doing anything, it just makes some things harder. And I think that is mostly true. But sometimes – sometimes we need to honour how hard it is. We need to make a different plan. It doesn’t mean we don’t still get there, but it does mean being allowed to do things a different way and in our own time.

Reflections

Sophie Kayani ended the day with some reflections and thanks. What has stayed with me are themes around everyone being different, and also part of a community; and around the effort involved in keeping up and appearing neurotypical. These themes are both important to me personally, and I think it’s so important that they aren’t forgotten.

Thank you to everyone who helped make the conference happen. To those reading this who will be at the Adult Conference, I look forward to seeing you there.

What stayed with you from yesterday’s conference?

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