Earlier this week I did my first session with a disability group for our cancer services access study (find out more about that here). Although I cannot share any of the people’s really powerful insights here I would like to share how I felt about the session.
The start of the session was very ADHD – a bit rushed and disorganised but lovely all the same. I was conversational from the start but had the wind blown out of my sails as the time had gotten confused, so I ended up there late. The participants were amazingly good about that by the way!
I hit it off quickly with some of the louder participants (surprise surprise) and I realised quite a while in that I had not once mentioned cancer or cancer services! I could see my colleagues doing this around the room as I was chit chatting with participants, talking about the creative artwork we were involved in.
We also spoke about anything else you could imagine, the weather, using public transport, diabetes, Burns Night, how to make the best roast potatoes. To be in a room full of other Disabled people was amazing, it doesn’t seem to matter what Disabled space I go into or whether I share the same bodymind as those in the group, I always feel welcome, I always have a laugh, we always put the world to rights, and I always feel like I’m home.
Our second session was very different, again we went to a disability group. We had a plan to talk about our favourite seasons as part of our introductions – instead we shared our experiences with lymphoedema and cancer services.
This group got right to the point! They had so much valuable information to share. The support group they run (and attend) is incredible, it is a self-advocacy group. This is fantastic but wouldn’t it be nice if us Disabled folk didn’t have to advocate for ourselves so much? It’s so exhausting.
Also, it doesn’t matter where I go, or what I’m doing, I will always find the radical leftist and I was not let down today!
We had our final session today and it feels slightly sad. I find it difficult when things come to an end. I feel like I’ve only just used to something, got super confident and experienced, and then it stops and straight onto the next stage and building my confidence again.
It’s been wonderful to do this work with other neurodivergent and disabled folk. There’s a feeling of connection there that I don’t get with non-disabled folk.
The communication is easier, conversation flows better, there’s no need to hide any parts of ourselves. It is no judgemental and honest.
These sessions have also been hard, to hear over and over again how different people have been failed by cancer services, belittled by staff and made to feel uncomfortable. The overall theme of every conversation I have had is that professionals do not listen, hospitals do not listen and the system does not listen.
So, the responsibility of being listened to, taking up room, being taken seriously ends up on the disabled person, the person who very possibly has cancer or may find out soon that they do. It’s heartbreaking to listen to but it means the work we are doing is needed.
I want neurodivergent and disabled people to feel listened to, to feel seen, cared for and respected. We don’t need validation from others by my goodness it would be nice if we did.
Give use accessible information, give us choices, involve us in every aspect of our care because it is our care.
I’m very excited to get onto the next phase of our work which is sharing our findings within cancer charities and NHS trusts. This is happening as soon as March with a forum of Clinical Nurse Specialists. We are making a video of everyone’s wonderful creations witu voice over of direct quotes and sharing them with the groups we created with. There will be the usual articles too as well as knowing that this pilot will turn into work which will talk to many marginalised groups and hopefully get staff and settings to do things differently.