Celebrating Neurodiversity – our journey to making it happen
People with ADHD make the best Pirates
My boss and I both have ‘pirate syndrome’ (aka ADHD), which means we are proudly ambitious, passionate and regularly shoot for the stars.
Some people can perceive this as ‘over promising’ and it can often lead to over extending ourselves – yet a great example of this working out for everyone is when we decided we would put on our first ever awards evening and conference.
It was around September last year when we realised we wanted to celebrate some of the incredible people we have had the pleasure to meet, work with, come to know of who are neurodiverse or conduct research and work to support neurodiverse people. We also wanted to discuss terminology, celebrate how far we’ve all come and bring people together as a #tribe. Most of all, we wanted to put on an event that we wanted to go to, one that included all possible flavours of neurodifference and allowed us to be our glorious, unusual selves.
In short, we wanted everyone’s ‘genius within’ to have a chance to shine.
But how could we make all of this happen? Organising anything in an organisation that has a wide range of neurodiverse employees, who are all busy working hard to support people (or pretending to be pirates), all of the time, can be tricky.
We started with the following questions:
- How could we make the event super slick and professional but also cost efficient enough to have a charity donation built in?
- How could we organise an inclusive event without pressure to conform but with enough structure to prevent chaos?
- How could we provide enough visual representation for the perspectious people but enough verbal interaction for the storytellers?
- Enough formality for those who need plans to relax and enough informality for those who connect through spontaneous and emergent emotion?
Money money money…
Our first hurdle was “great idea, but how to fund it?”
Because we are an SME and therefore not rolling in cash, this required some thinking – conferences are expensive to deliver. We are also a community interest company, which means we re-invest some of our profit each year to our community of interest – the neurodiverse. We wanted to make an investment, but we knew we couldn’t fund it all. We also wanted it to be a community event, and stretch beyond Genius Within. So being pirates and not afraid of asking, we contacted our heroes and invited them.
Once Judy Singer and Steve Silberman had agreed to come, and because we are not real pirates, we knew it was important not to keep them for ourselves, so the community spirit of ‘from each according to means, to each according to need’ was invoked.
Luckily, our enthusiasm was infectious (it usually is) and we soon had a group of equally invested, committed partners. Roxanne Hobbs, our esteemed speakers, our sponsors – everyone started pulling their weight.
All waged speakers paid for their own travel and tickets, those who felt they could contribute did. All managers in the Genius Within team paid for our own tickets. Collectively, the organisers invested our time, our ideas and our money to make this a community event that represented the values of our social enterprise. We sold tickets and raised money, and we also gave some complementary places to those that couldn’t afford to attend and allowed spread payments. Our award winners were given free tickets and this really helped ensure a wide range of voices were heard. – money should never be a requirement to be around your #tribe and we wanted to be as inclusive as possible.
We’d like to do this better next year and be clear about bursaries and discounts.
It’s for Charity!
A really important aspect of celebrating neurodiversity was that we also wanted to use the event to raise money for our favourite charity – Tourettes Action.
Tourette Syndrome has a similar prevalence to Autism but only about 1% of the funding. Tourettes Action also conduct amazing research and deliver incredible support with their money. This meant not only paying for venue and unwaged speakers / winners / bursaries food etc. but also making sure we would sell enough tickets and get enough sponsorship to have a surplus.
I am delighted to tell you that we have over £2000 to donate and that we sold ALL the tickets!!!
We even had to bargain with the venue to release more as we had a waiting list! We are happy to share the accounts from the event with any sponsor or attendee, so that you can be assured of our transparency and commitment to making this a gift for the community, not something that feathers our own nests. Just let us know if you’d like to see the spreadsheet.
So, with the funds taken care of (despite some nail biting moments) we moved on to our second logistical problem – knowing how overwhelmed conferences usually make us as neurodiverse people.
How could we get everyone together without freaking ourselves out?
We started off by thinking how to make the event inclusive and accessible, which sounds easy, but the reason we were thinking about it is because of all the events we have been to and felt uncomfortable at.
We started by thinking about dress codes – some people like to follow rules, for others it is more important to be comfortable. We invited people to come in ‘business attire’ for the awards evening, but also sent a message that whatever people wore would be OK with us, and we particularly fond of fancy dress (although no one with ADHD came as a pirate in the end, our CEO did wear diamante cat ears to present an award, and everyone looked great).
We also tried to support any anxiety people may have had, by offering a range of support -from buddies to accessibility of contributions (paper and pen, twitter and roaming microphones).
Sometimes getting talking to people can be nerve racking. Whilst the conference was full of friendly, interesting people, it helped to have a question to kick things off. Our suggested icebreaker question to start conversations was ‘What does neurodiversity mean to you?’
We made it really obvious who the genius team were at the venue and invited people to ask any of us for help at any time.
We also offered other accommodations including reserved seating, being seated near doors for easy exit and late entrance (to avoid crowds) or near the back to avoid feeling self-conscious.
We made sure the venue had quiet outdoor spaces for decompression breaks –to recover from sensory overwhelm. Based on feedback already recieved, next time we will make sure there is a separate quiet room indoors, and include much clearer signage.
We do know we created the longest #hashtags known to man – but we also know some dyslexics who dislike capital letters and numbers, and by the time we’d thought about it properly the printing had been done! We will have a shorter one for next year we promise.
If there is anything that is important to you that we didn’t think about, let us know and we will do our best to accommodate your preferences in the future.
Celebrating Neurodiversity – The Awards
We started the event with an awards ceremony. We gave out 6 awards to people that had done amazing things, busted stereotypes and changed the world to be more inclusive. You can read all about the well deserving winners by following this link.
It was brilliant!!!!
We were honoured and delighted to have Judy singer aka the mother (Grand Dame) of neurodiversity give a talk to kick us off, and delighted to have so many colleagues, peers and geniuses at the tables. At one point, sitting on a table of Dr’s, academics, authors and senior members of Microsoft I got a real flash of imposter syndrome, quickly replaced by joy at having made it this far and earned my place at that table.
We started a buddy system and supported people who were anxious or nervous, and delighted in the mix of people and personalities who enjoyed the evening. Predictably, some of us pirate-types, also stayed up too late in the bar – which could have been a mistake as we had the conference the next day!
Yet relationships were made, and in this informal atmosphere ideas were formed and shared and we all went to bed with a feeling of hope.
Celebrating Neurodiversity – The conference
It was a packed day with diverse speakers and sessions, all made to run smoothly by the tireless work of the genius team – even the inevitable tech glitches were resolved.
The theme throughout the day was discussing what neurodiversity meant to us all – and virtually every condition and perspective had a voice. I am delighted to say that despite so many experiences and opinions sharing the same space, the entire day was respectful, open and harmonious, thanks in part to some clear boundary setting at the start.
In a fairly un-pirate like way, we set the ‘rules of respectful engagement’:
- We are allowed to have differences of opinion and our experiences are allowed to be spoken about,
- Our job is to listen to each other, not judge or find offence when someones’ experience differs from our own.
- We shall operate with curiosity, not contempt.
- The themes from this conference will be emergent, self-organising and nuanced, we are not trying to decide what is right or wrong, but instead hear: For us, right now, it is like what? What would we like it to be like?
I was delighted to ‘speak’ on behalf of my non-verbal sensory seeking child, not that I could be his voice, but I gave a good explanation of how he uses electronic toys to communicate and how he eats noise. I was almost moved to tears by the possibilities for non-verbal communication in another session (I don’t cry very often because, well, pirates don’t).
Dr Nancy Doyle, Steve Silberman (author of Neurotribes), Professor Amanda Kirby (Do-it solutions), Judy Singer, John Levell (BDA) and Paul Stevenson (Tourettes Action) shared their passion, knowledge, hopes and fears to a full house. There was no boundary between professionals and stakeholders, no ‘us and them’, no helper and helpee’, just parity of esteem between representative members of a community.
Roxanne Hobbs donated copies of her excellent book ‘Diverted’ to any parent of a neurodiverse child that was interested. People got star struck by Steve and Judy – both of whom are approachable, affable people and seemed slightly bemused by the bestowed status but took it in their strides.
We held a ‘world café’ session where everyone could input into 5 questions, and live tweeted the questions and responses for those who couldn’t attend in person. The summary of our discussions will be available soon! We took notes in groups, with those happy to scribe scribing. We had an artist create a visual representation of our discussion. People moved around frequently and one ADHD attendee said “I’ve never been to a conference where I didn’t have to sit down the whole time.”
New connections were made and there was a feeling of acceptance and love in the air. One participant remarked “conferences are usually too ‘people-y’ for me but I don’t mind this, because these are my people.”
We raised over £2000 for Tourettes action, and we all left buzzing, hot and tired but excited about the future. Our neurodiverse community need a place to congregate and share ideas. We’re working really hard to facilitate that and will continue to do so. We’re doing this for the love and the collaboration, so the more people join in the better.
Get in touch, share you experiences, feedback and ideas, we’d love to hear from you!
Will we do it all again next year? Oh yes!
And two of our sponsors liked it so much they are BOTH offering free space for next year!!!!