The room where it happens

If you’re not round the table, you’re probably on the menu. I first heard that statement in 2010. I haven’t heard the case for representation so well put since and you don’t need to dig too deep to see how true it is. For so many disabled people, life is characterised by broken systems and endless misunderstanding about our experience and worth. This means that many of us don’t get to live up to our full potential, and in its most extreme, it means that some of us die trying. That’s one of the reasons why, every year, on this day (Dec 3^rd), disabled people and our allies across the world, come together to celebrate the fights we’ve won, rally for those we’ve yet to win and fight for our full and equal participation in all aspects of society. 

It’s also why our mantra in the movement is ‘nothing about us without us’. We know that you cannot continue to put the same people in the room and expect different answers. Our equal participation in society is fundamentally reliant on our representation in every room where things happen, from the high street and workplace to boardrooms and parliaments. Sadly, we’re a way off that yet, and that’s why after decades of austerity, we’ve found our rights are so often ignored or are the first to go.

Successive cuts to Local Authority funding have seen social care cut to the bone. Disabled people have been left without the essential support they need. In 2018, the EHRC estimated that across Scotland, there would need to be an increase of £510 million in funding for social care by 2020 (yes, that’s this year!), just to maintain the underfunded and inadequate 2018 levels of service.  Such an increase has not come. 

In fact, in this year alone, the budget for the Board that allocates social work funding in Glasgow (where I live) was cut by £7.6m. It’s so bad, in some local authorities’ people are being given 12 hour incontinence pads just so they don’t need to pay someone to come in and change them so often. This has been the case since long before COVID-19. Oh, and in case you were wondering, things have been this bad since long before COVID-19. When the pandemic hit, the system was already broken. Where has the political outrage been for the millions of disabled people in Scotland? Well, we’re not in the room – many of us are fighting to survive.

The SHRC says that COVID-19 has “exacerbated pre-existing inadequacies” of the social care system in Scotland. They go on to report that many people have been left in “dire situations”, including “being forced to sleep in wheelchairs, unable to get out of bed, unable to wash and dress themselves… [and] having to move in with family”. COVID-19 has laid bare the cracks – nay – the canyons – in the social care system.  I sincerely hope we never let it get this bad again. Indeed every human rights law in the land demands that of us.

Basic care, pretty fundamental stuff.  So too is a right to an accessible, affordable home.  In 2018, the EHRC found ‘a hidden crisis’ of disabled people across Scotland stuck in homes which don’t meet our needs or requirements. They highlighted that 61,000 disabled people are waiting for adaptations to their home, meaning many are sleeping, eating and living in one room and that there needs to be 17,000 more houses for people who use wheelchairs if we’re to begin to address this.

Compared to non-disabled people, we are more likely to have low or no qualifications at SCQF level 4, less likely to leave school to a positive destination, and a lower proportion leave school for higher education or have university degrees. 

The job market for us is just as grim. The current disability pay gap for all employees stands at 28.4 percentage points (ppts), and for disabled BAME workers it’s even higher, at 34.7ppts. This pay gap means that disabled people who are able to access employment, effectively work for free for the last 57 days (or 8 weeks) of the year. The Trades Union Congress highlighted some of the impact of being paid less than non-disabled people, including that 34 per cent of disabled workers have cut back on food for themselves, compared to 18 per cent of non-disabled workers. We’re also less likely to be in employment in the first place. Since the beginning of the recession in 2008, the proportion of Scottish working age disabled people in employment has fallen to just over 42 per cent. In comparison the employment rate of non-disabled people now stands at around 80 per cent (and the pandemic will no doubt have made this worse). When the going gets tough, it’s usually disabled people who have to get going. 

The Ethical Standards Commissioner set the Scottish Government a target that 15 per cent of applications for boards of public bodies should be from disabled people. In the most recent published figures from 2018, only 9.4 per cent of applications were from disabled people. The last Scottish Parliament election saw a reduction in the number of MSPs who self-defined as disabled, and even then, the numbers are incredibly small. Before the election there were three disabled MSPs; after it, there was only one. 

One disabled member, in 129 in the room. With one in five people in Scotland being disabled, a fully representative Scottish Parliament should have around 23 disabled MSPs.  The picture in Council Chambers and the House of Commons is scarcely better.

I could go on, but I’m sure you get the picture – disability inequality is persistent and pervasive. The evidence is plain to see; services, systems and the structures in place to create and monitor them, have been designed without disabled people’s input. For far too long, inequality has simply been the default because we haven’t been in the room – it’s time we fixed that by design. You can’t design that fix by doing more of the same things, in a system that is run by and for the same people. 

Whether or not the people who make decisions – be that in the Board room or Parliament – have the best of intentions, and I’m sure they do, the simple fact is that the lived experience they bring continues to be non-disabled, straight, white, male and stale.  And so too therefore, are the solutions to the increasingly difficult challenges we face.

The theme of the UN’s conference to mark today is “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”.  The pandemic has been devastating, it's hard (almost impossible even) to muster the strength to see anything positive could come from such devastation. But at least it is that light has been shone in some very dark corners. That light has in pockets, illuminated a consciousness and an expectation that we have to do things differently. 

I passionately believe that to do this properly, for a better future to rise from the ashes, we cannot continue to put the same people in the room where things happen and expect different results. We have to change that and we should seize the moment to do it.

It’s time to give to give a voice to the people in our country who for too long have been seldom heard. We need to equip our high streets, work places, board rooms and parliaments to face and tackle the challenges of today and tomorrow. I’ve spent years looking in at tables where the decisions that affect disabled people’s life are taken, pleading for the menu to change. Now is our time to be around that table. Let us use today to celebrate disabled people and all our worth, and tomorrow to put that talent in the room where it happens.

Pam Duncan-Glancy works in the NHS and is seeking selection for Labour’s Glasgow regional list for next year’s Holyrood election.