Making co-production accessible

Published on behalf of Ruth Murran (@ruth_murran), one of our co-producers.

Here are Ruth’s reflections following our first co-production project in the content design team at Scope. You can read more about the project here.

What is co-production?

I don’t think it’s surprising that defining co-production can be difficult because I think it can mean slightly different things, depending on who stakeholders are, and can have different ‘levels’.

I think the key things are that it is people who use the service (or ‘thing’) who are the co-producers or have experienced the situation.

Also, that they are ideally involved from the very start of any project being set up until its end and that they have a discussed and negotiated role.

I think that means that it won’t automatically be called co-production because disabled people are employed by Scope. They won’t necessarily be stakeholders and I think the perspective of non-employees is very important in the process. I wonder if being an employee changes someone’s status too much.

My personal experience

This is the second time that I have written about being a Scope co-producer and I am resisting the urge to take the easy path (which would be to more or less repeat what I said last time with a few new adjectives and even more praise). That praise would definitely be warranted. The project has been a great experience with great people.

This time, however, I find myself needing to take my reflection in a different direction because co-production is always thought-provoking and this project (the testing subjects, team members, research, workshops and prototypes) have combined to make me preoccupied with adjustments.

For once I am not talking about the ‘reasonable’ kind, those oft-denied, deliberately hard to define ones that, for disabled people, can be the difference between having a job, home, education, healthcare, relationship, cappuccino in a café or evening out with friends and not. I’m thinking about the ones that we have to make for ourselves. I’m suggesting that the question asked of disabled people shouldn’t be ‘What adjustments do you need us to make?’ but becomes ‘What adjustments have you already made in order to be here today?’

That I am even contemplating writing about these very personal adjustments is testament to the positive feelings I have about the co-production project because the prospect of revealing those details is usually miserably terrifying. It is as if I am listing all the reasons why I can’t do a job, am pointing out why a non-disabled person would do it better and it requires that I exhaust myself reflecting on the things that I find difficult or have never been able to, or now cannot, do; I am taking a risk. I feel as if I am making a fuss.

I have decided to assume that ‘today’ I am attending a Zoom meeting (thankfully mostly accessible). Every disabled person’s list differs but my current priorities are avoiding triggering a rise in my pain levels, or muscle spasms that mean I cannot move, and ensuring that I have allocated sufficient of my usable hours to the meeting.

By this I mean hours that can be spent doing something other than watching television or listening to a book or radio programme. These hours are reducing as I age. Five years ago, they were sufficient for me to teach full time and socialise a bit. Now I average about five a day. They naturally occur between 10am and 2pm with the final one for producing, and eating, some dinner around 6pm. Outside of these times I will need to make additional accommodations (extra physio, heat, medication, easier food, easier clothing and recovery time). These hours are precious, not just because they are in increasingly short supply, but because they are the ones that give me the greatest sense of being myself, the ones that determine whether I feel joyful and valuable that day. If they aren’t filled my wellbeing suffers. If I overdraw on one day, I must pay, with interest, another. That might mean missing a shower, increased interruptions to my sleep, or cancelling an already rare social event. The deficit might mean that I can’t leave my home to maintain my essential wheeling muscles or keep up with family responsibilities.

My Zoom meeting will require concentration; I will need to be able to turn down the volume on my ever-present pain more than usual. I already do this with wheelchair, crutches, retirement, exercise, opioids, living in a bungalow, furniture choices and being fortunate enough to have a secure income but I will need more strategies.

Sitting at a desk, or with a laptop on my knees, might send me spiralling into debt. So might wrangling laundry, doing a stir-fry, filling a kettle or putting on socks. Eighteen months of COVID threat, of course, has made all of this harder and more complicated. My reserves are considerably reduced and the range of available strategies far smaller. I have never felt so misunderstood or disregarded by society. I am more defensive and more outraged. Happiness is harder to come by and the world has never been less accessible to me.
In addition to my hot water bottle, recliner armchair and phone, these are the things that I will bring to my meeting. They are my version of the things that every disabled person learns to accommodate and then mostly conceal. Being part of this co-produced project has made it possible for me to talk about them.