This year’s Rare Disease Day is a chance to raise awareness around the world for individuals affected by rare diseases. Observed annually on the last day of February, it aims to improve public understanding and support for those living with rare conditions. The theme for this year is “More than you can Imagine,” and I want to share a time when I did just that.
Back in August, during the AGM in Warwick, Serena, Thines, Beth, and I were chatting and enjoying some pizza in the evening. I started thinking, “What if I hosted a talk at work for Disability History Month (DHM)?” With that idea in mind, I casually asked Thines, “Would you be interested in doing a talk at my local library?” Without hesitation, he said yes. I told him I’d follow up with some potential dates, and then we continued enjoying the rest of our evening.
The following week, once we got back to work, I couldn’t shake the thought that my local library could do so much more to celebrate disabilities. So, I emailed my supervisor, Beth, and some of my colleagues with a list of ideas for DHM, including a talk, a display, and a special kids’ book buddies event. My supervisor loved the idea, and I got to work. I reached out to Thines again to finalize a date and informed him that the topic would be ‘Livelihood and Employment.’
Next, I had to determine which library location would be best suited for hosting the talk while ensuring accessibility. I had two options: the library attached to my old secondary school or my local library. After much deliberation and discussions with my supervisors, Beth and I decided on the library at my old secondary school.
Over the next couple of months, my colleagues and I worked on designing a promotional poster and publishing the event on our page. Beth and I also compiled a list of schools with SEN (Special Educational Needs) departments, local SEN specialist organizations, and other relevant groups. We split the list and emailed all the organizations in my local area. There were some positive responses on social media, and schools promoted the event to parents who might be interested. I also reached out to the Brittle Bone Society for leaflets to display at the event. In the meantime, I asked my senior supervisor if I could observe a talk, and she suggested staying behind to watch an author talk for inspiration.
After work, I would occasionally check in with Thines on his progress and see what type of talk he had in mind. He mentioned wanting a conversational-style discussion rather than simply talking at people for an hour. I shared this with Beth, who then emailed me potential questions we could use to guide the conversation. The questions were perfect, and I forwarded them to Thines so he could prepare his responses. Some of the key questions included:
- What would you tell your teenage self about your life now?
- What barriers have you faced in employment?
- What are you most proud of in your career?
As the day of the talk approached, I focused on finalizing event details to ensure everything went smoothly. I brought my tripod, ready to capture photos and videos of the event. I also arranged a video call with Thines to introduce him to my colleagues who would be working that day. He asked me to speak briefly about what DHM was, so I edited his slides and added a few of my own.
The big day finally arrived! I went to work early to set up the space and arrange the chairs with Beth and my colleagues. Thines arrived ahead of time, allowing us to go over final details—and, most importantly, order pizza for lunch! Beth and I had also invited Amna as a surprise for Thines at the event. He was genuinely surprised and happy to see her there.
The talk went really well. I handled the technical aspects and introduced DHM, while Beth led the conversation by asking Thines the prepared questions. This also allowed me to step in and help expand on Thines’s answers by asking follow-up questions. The event was a success, with local members of the public attending, mostly adults. However, in all the excitement, I completely forgot to set up the tripod and take pictures and videos!
This experience was something I once thought I’d never be able to do or accomplish in my workplace, and I’m incredibly grateful that I did. The event highlighted the importance of creating safe spaces to discuss disabilities openly, which is why I’ve now introduced the Disabili-Tea Social Club. This new initiative takes place once a month at my local library, fostering meaningful conversations and continuing the dialogue we started during the talk. It allows people to meet new friends, share their experiences, and participate in fun activities in a supportive and inclusive environment.
