I was invited to give a talk about the role of design in radically transforming government at a conference organised by Future Gov in Newcastle in May 2019. I started off delivering a talk about the work I am involved in at Scottish Government building user centred service design into the heart of how we work. But I had an issue that wouldn’t let me leave things at that. I am grateful to the team at Future Gov for a chance to get my thoughts out. What follows is an after the fact and no doubt less garbled account of what I tried to say…
I could at this point carry on with the so far so standard presentation.
I could. But I am not going to.
Don’t get me wrong. I am unbelievably proud of what we have helped to achieve in building a design culture into Scotland’s public services, Scotland’s government.
The fact that in Scotland we have both a National Performance Framework for the country and a Social Security Act and Charter that effectively both say nothing for us without us, nothing for us that does not treat us with dignity and respect, fills me with pride.
The design community inside Scottish Government is a source of huge inspiration for me and more than anything gives me hope for my future as someone who has more reason than many to use public services.
But the thing is – I am so unbelievably tired of being a disabled woman in a world that is not just disabling me, it’s doing that by design. With design.
Now don’t get me wrong. We in the design community in the private and third and public sectors are making a lot of progress in getting better at designing and delivering products and services. Including for people with disabilities. But we are not changing the world for disabled people fast enough, consistently enough. We are still designing products and services that disable, disempower or simply ignore disabled people.
Part of the reason for that is that we are not diverse enough ourselves. The most pernicious impact of a lack of inclusive and accessible design is when disabled people themselves cannot be present in the design work force.
One in 55 people in the UK is a wheelchair user, and by far the majority of those are permanent wheelchair users. So where are they? Because 1 in 55 people I encounter in my daily life is not in a wheelchair. At least not here – the ratio goes up considerably when I am with my partner in my other home Munich. In Munich I see wheelchair users all over the place. It’s normal.
I’m tired of not seeing myself represented in my community. Tired of looking around rooms and not seeing any other visibly disabled people.
Again, don’t get me wrong. I know that there will be people in our community, people here today, who have hidden or not obviously visible disabilities. And I know that diversity, in particular intersectional diversity, continues to be a problem for all sorts of people, not just disabled people. As a woman over 50, as a lesbian, as a mother, I know there are so many diversity challenges in our industry. But I also know that statistically there ought to be more visibly disabled people here, and in our community. Which is a worry as I know how crucial design is to making the world more inclusive and accessible.
In 2018 the Design Council published a report on the state of the design industries in the UK. It acknowledged that design has a diversity problem. It gave stats on women, on BAME, it even acknowledged problems with socio-economic diversity. But it explicitly did not mention one group. Disabled people.
Everything but…. Do you know what it feels like to be the forgotten of the overlooked? Well it feels pretty much the same as every time I am invited to a “stand up”, or asked to take part in a workshop that presumes I am comfortably mobile, or walk into a building that has no easy access, or am taken to a service lift to stand with the dirty dishes and deliveries to get from one floor to another, or left the only person sitting at a ‘stand up buffet mixer’ at an event. All of those things and more have happened to me. Happen to me. Routinely. Every day in some cases.
I am so unbelievably tired of us not getting this sorted. I am so unbelievably tired of how painstakingly slow progress in ensuring that our world is an inclusive and accessible world has been. Because those words – inclusive, accessible, they just mean fair. And our world is not fair and we in the design and digital communities are as much a part of the problem as anyone.
I have secondary progressive MS. Of all the people who have had this as long as me only 1 in 50 is still working. Every time I remember that I feel sick. I know some of those people are absolutely unable to work. But many would be if the world was better designed to accommodate their needs. I am 1 in 50 because I am lucky. Not because I am special. Lucky to have a well paid job so I can afford the huge additional costs of being in the world with a disability like mine. Lucky to work for a supportive employer. Lucky to be senior and old enough to be confident and outspoken. Lucky I can still get about with crutches. Lucky to have enormously supportive friends and family.
In the mid 80s I came out as lesbian in a world that was still at that time actively discriminating against me. Back then it was hard to imagine that just twenty years later we would have the freedoms we now take for granted (albeit some of us will never be quite so sure those freedoms are here to stay!).
I know that apparently unthinkable changes can and will happen. I am living proof they can happen. So I am asking other disabled people already working in the industry to ‘come out’, band together, and campaign for change. I want all of us to start noticing where we are not and start asking themselves – where are they, why is this happening, and what can I do to change this? After all, if the design community can’t change this what hope for the rest of society?
I believe in the power of design. I believe in taking the time to identify and understand the right problem and solve the problem right. This problem still exists because we are not asking the right questions of ourselves, aren’t working to solve the right problems. The Design Council cannot account for what we as an industry do not count. Cannot notice what we do not notice. Cannot drive for change we are not driving for.
Change can happen. But not without questions and not without action. So please, design community, start asking those questions. Start identifying those problems. Start solving them.
Design community – we need to talk about disabled people. And then we need to do something.