Editor’s note: join me in welcoming a piece from Fazilet Hadi, who, as well as being a friend of the Debrief, is head of policy at Disability Rights UK.
The disabled people’s movement in the UK has made some amazing advances. But now those feel like a long time ago.
Previous generations of activists fought for rights and supports, and some of the gains they made are still with us. As someone who’s been disabled most of my life, they’ve changed what’s possible for me and for many others.
But where we used to be a model of progress, the UK is now a model of how rights can be eroded. Over a decade of punitive cuts mean that conditions for the vast majority of disabled people have stalled or gotten worse.
In this edition I reflect on what was achieved and what we need to do to take things forward. Taking a longer view gives us hope.
Get a disability lens on world news
Weekly in your inbox
Disability Debrief is supported on a pay-as-you can basis. Thanks to Jennifer for a new contribution.
In the UK, we look back with fondness and pride to the generation of disability activists in the 1980s and 1990s. They freed thousands of disabled people from long-stay institutions, and won benefits for support, to meet costs of disability and to enable workplace adjustments. The Disability Discrimination act of 1995 came from a long and hard fight.
My life has been immeasurably enhanced by these hard-won gains. I started losing my sight at 9 years old and was registered as blind in my late teens. I went to university and law college, getting my first job as a lawyer in a pre-digital world.
Equality rights have meant assistance with rail and air travel (not always perfect!) and together with new technologies have greatly increased my access and enjoyment of books, television, cinema and theatre.
When I was 13 years old I realised I would need a job to help with things I couldn’t do myself. I didn’t know how I would get one, as Saturday jobs on the high-street weren’t accessible to me. Access to Work, introduced in 1994, has provided the workplace adjustments I need, and enabled me to have a fulfilling professional life.
In turn the well-paying jobs I’ve held through my working life allowed me to meet additional costs and support needs related to my disability, and have a good standard of living. But I am all too aware that this is not the experience of the majority of disabled people in this country.
At the start of the 2000s, change wasn’t dramatic, but we did seem to be making progress. The Disability Rights Commission had just been established, digital television offered new accessibility, and some benefits were extended in scope. The UK ratified the UN Convention on the Rights of People with Disabilities and the government was working with the disability movement to go forward.
But since 2010, the UK Government has ruthlessly slashed money for public services like education, health and social care. It established a benefits system that doesn’t meet essential costs of life. And to accompany these hostile and punitive cuts and processes, it created a narrative of scroungers and shirkers.
These swingeing cuts to public services have had a disproportionate impact on disabled people. To live our lives, many of us need, permanently or long-term, the state benefits that provide additional support in the home, the classroom or socially. We need decent incomes and for our support needs to be met. Legal rights to equality of treatment are essential but they are not enough, especially when they're not funded or enforced.
The negative economic and social climate was compounded by the Covid pandemic. Care, health and education services were severely curtailed. Disabled people were consigned to being “vulnerable”, taking away our agency and dignity. Our lives were deemed to be worth less than those of non-disabled people and we found ourselves without support from family, friends or professionals.
Today the cost of living crisis is hitting disabled people disproportionately hard. We were already over-represented among those living in poverty and our additional costs are rising. Many of us have higher energy costs due to the need to keep warm to manage long term health conditions or to charge mobility and health related equipment. Many have to buy more expensive food for dietary reasons, because we can’t get to the cheapest stores or can’t cook from scratch.
We need the government to institute strategies to address these systemic inequalities. The evidence is shocking and continues to mount. Charities, think tanks and the Office for National Statistics have all produced evidence showing how disabled people experience low educational attainment, high unemployment, increased poverty and poorer wellbeing.
But there has been no bold Government plan in response. In 2021 the Government produced a National Disability Strategy, which set out the devastating evidence on inequality but could only propose a number of small-scale departmental actions, tinkering rather than transforming. The positive steps being taken remain modest.
And even that strategy was delayed when the government spent eighteen months appealing a court ruling it had not followed a lawful consultation. In the meantime, government departments continued to publish major proposals on social care, benefits, employment and education which do little to challenge systemic inequalities and in some areas make things worse.
I often feel that we’re going backwards. And some days it’s easy to think we made no progress. But that’s too simple. Our previous gains have put us in a different situation. The civil servants I talk to today have a much better understanding of disability from those I talked to thirty years ago. Disability-related supports can be undermined but the government would find it hard to take them away entirely. Today’s battles are different.
Turning the Tide
Our society has new divisions we need to cross, and much more is needed to tackle what’s in front of us. Organizations led by disabled people are underfunded and have less capacity than they used to. There is deepening poverty and a reluctance to raise public spending. Decision-making has been devolved, media fragmented and there’s a gulf in attitudes between generations.
What do we need to do to take things forward? The brilliant campaigning that has gone before gives us some answers. But we also need to find new ways to achieve a world where disabled people are valued and can take our place as equal citizens.
I don’t think there are any silver bullets. We need to renew our focus on changing the social attitudes that underpin our exclusion. As well as rebuilding our own movement we need to make sure we are each playing to our strengths. And to understand that progress will come from a range of influencing techniques.
Tackling social attitudes
Disability is cloaked with attitudes of charity and pity that make our oppression hard to see and hard to dismantle. But changing these attitudes isn’t easy. Throughout history, we’ve been pushed to the margins, lived in poverty, faced abuse and been denied our humanity.
Sometimes changing attitudes isn’t the priority. When I worked as equalities officer in local government in the 1990s, we thought it was better to focus on changing behaviours and actions rather than attitudes. And at the time this was probably wise, as we didn’t have social media or a culture of sharing our feelings and thoughts.
But today I don’t think we can ignore the need to win hearts as well as minds. We can take inspiration from the Black Lives Matter and Me Too movements. The ways they’ve called out racism and misogyny has given people new perspectives on historic and systemic inequality.
How can the Disabled people’s movement call out injustice in the same way? Societal institutions and services have been designed without our involvement or input, creating barriers to our inclusion. Yet, these issues aren’t acknowledged or understood. We need new lenses through which to view past injustices and shape future practice.
Disabled people speaking out
We can see how attitudes to disabled people are being successfully challenged by disabled people in public life. Disabled celebrities and social media influencers are speaking openly about the discrimination they face, sharing their approaches to life and defeating stereotypes.
A particular energy and assertiveness is coming from younger disabled people. They are refusing to attend inaccessible schools, and are open and upfront about what they need from employers. Some are influencers on Instagram and Tik Tok, bold about sharing their own personal stories and assisting others to understand the unfairness they face. This generation has new approaches to challenging oppression.
The movement for disability equality will be made immeasurably stronger with their involvement. Working within more traditional charities, we need to consider how to support and harness their energy and voice, and how to enable them to take leadership roles. At Disability Rights UK we’re starting to build these connections with our own TikTok account. As well as sharing information, we want to promote opportunities to join the disability movement.
We’ve also been trying to use this media environment in new ways of campaigning. Earlier this year we launched the Rights on Flights campaign, in partnership with Sophie Morgan, a disabled television presenter. It challenges poor passenger assistance and the failure to protect wheelchairs and other mobility devices on airplanes. The campaign blends a strongly personal story highlighting injustice with a call for increased rights. The government and the regulator have since announced that action will be taken.
Finding community and voice
Many years of funding cuts have had a massive impact on organizations led by disabled people. There are fewer of them, and those that remain often struggle to survive. Capacity for campaigning, communication and activism is limited.
But having said that, the organizations that do exist are doing wonderful things and coming together more and more, to create a stronger community and voice. There is growing cooperation across disabled people’s organizations, with mutual support for each other’s campaigns and more exchange of views and learning.
In England, the Disabled People’s Organizations (DPO) Forum has just launched the Disabled People's Manifesto and will campaign on it ahead of the upcoming general election. We are calling for a transformational plan with key actions to increase representation, rights, and support for independence and inclusion.
Multiply the voices seeking change
The disability movement often chooses to go it alone. That’s understandable as our voices are almost always at the margins. But this isn’t something that we can do by ourselves. It’s absolutely right that the battle for disability equality should be led by disabled people, but how do we build wider support?
Having allies that support our cause makes a huge difference. There are many on our side, whether family members, friends, carers, professionals, businesses or charities. A big part of my own work at Disability Rights UK is working in partnerships with charities, foundations, trade unions and think tanks. These alliances bring additional evidence and expertise, multiply the voices seeking change and help us to reach new audiences and decision makers.
Arenas of influence
We need to explore the options we have to show where discrimination is happening and influence change. There are important venues for this in the courts, in government, and on the streets.
We have a good track record in legal action. Disabled people have done a great job of challenging both unreasonable and unlawful decisions in the courts. Whilst these are not always won, they undoubtedly exert pressure.
Failures to implement the UN Convention were highlighted to secure an inquiry by the UN Committee on the Rights of Persons with Disabilities in 2016. Its damning findings were recently followed up on when in August, a delegation of disabled people's organizations went to the UN in Geneva to share how disabled people's experiences in daily life have regressed further since 2016.
A very current example of using all possible arenas of influence is that disabled people's organizations will give evidence at the upcoming session of the UK's Covid-19 public inquiry, putting the spotlight on government failures in respect of disabled people.
As for government itself, the number of disabled people in political office and public leadership roles is appallingly low. The government should re-establish the fund to support disabled parliamentary candidates. We need political parties to provide reasonable adjustments, set targets to counter historic under-representation and improve their engagement and communication with disabled voters. And for public appointments, value should be given to diverse skills and experiences, not just long professional service in establishment institutions.
And sometimes it’s important to go further. Protest is an important part of bringing about change. Direct action expresses anger at the injustice we face, attracts media and political attention and galvanises wider support. It was used to great effect in the 1980s and 1990s to bring about the Disability Discrimination Act. Some groups within the disability movement have continued to use protest as a key tactic. Perhaps more of us need to join them.
Taking a longer view
The ways we fight for change may not always bring immediate benefits. As campaigners and activists, we care deeply about improving the world for disabled people, and the challenges of the context we are in will give us many reasons to be dispirited. Change is painfully slow.
We need to view things over a longer period. What we do today might have fruition in twenty years. Wherever we live and whatever influencing method we use, we must stay strong, united and optimistic. The many things we do today will build on the amazing advances already achieved, and lay the ground work for amazing advances of the future.
Striving for a better tomorrow,
Thanks to Fazilet Hadi for joining us to share her insights, and to Disability Rights UK for making this possible. Disability Rights UK is the country's leading organisation led by, run by, and working for disabled people.
The edition was edited by Peter Torres Fremlin. Disability Debrief is made possible by support from the individuals and organizations that read it.