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‘Nearly All Leading Voices in Learning Disability Advocacy Are White – This Must Change’

When the narrative is dominated by people who look different and don’t share ethnic minority experiences, the system will continue to fail, writes Ramandeep Kaur

Photo: Tina Gutierrez/Alamy

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“World-leading” and “ground-breaking” were the words Conservative MP Liam Fox used to persuade members of both the House of Commons and the Lords to enact into legislation a Private Members Bill for a Down Syndrome Act. With much fanfare and celebration of cross-party support, the Act was finally passed into law last April. 

A consultation has since come and gone, and there is still no sign of the much-hailed guidance, which was the core element of the Act. This, it was claimed, would describe what specialist help was required by people with ‘Down Syndrome’ (Fox and his supporters insisted on the American usage) and how to implement it.

The Act’s many supporters argued that it would help people secure the right support in education, health, social care and housing. Even the youth justice system, it was said, would be improved.

That was 18 long months ago.

At the time, Stephen Unwin and I criticised in these pages the deeply divisive and ineffective nature of the legislation. But, throughout the campaign, there was one crucial omission: nobody listened to people from ethnic minority groups.

The so-called National Down Syndrome Policy Group (NDSPG) – all white, all middle-class – produced an ‘evidence-based’ paper to support its arguments, but there was not one mention of race, ethnicity or culture in its hefty 80 pages. 

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People like my son Harry, who has Down’s syndrome and is of mixed Indian and Northern Irish heritage, were completely ignored. When challenged, the NDSPG told me to find the evidence and report back. Here was a British Indian woman campaigning for the rights and dignities of her son, pointing out a problem not created by me, being told to go away and find the solution to something they had not even considered. Simply put, I was made to feel that I wasn’t wanted.

These problems occur across the public sector.

The COVID Inquiry recently heard from former Downing Street director of communications, Lee Cain, about how civil servants – especially policy-makers – are disastrously lacking in diversity (seen as a dirty word by some who argue that too much money is being spent on such things).

He explained that “if you lack that diversity within a team, you create problems in decision-making and policy development and culture”. This inevitably resulted in the needs of people from ethnic minorities being almost completely ignored when plans were being developed around how to tackle the Coronavirus. 

The impact, as we now know, was hugely negative – with by far the highest death rates being in the Bangladeshi and Pakistani communities. People with learning disabilities were up to six times more likely to die from COVID during the first wave of the pandemic.  Harry, who still lives at home, was fine, but statistically his chances were very limited.

Professor Chris Hatton, of Manchester Metropolitan University, recently conducted research with the Race and Health Observatory into public policies affecting people with learning disabilities and found that the vast majority failed to consider ethnic minority groups at all. It also showed that, without significant improvements, the life expectancy of people with severe learning disabilities from ethnic minority groups will remain at the heartbreakingly young age of 34 years. It is devastating to realise that this is somehow seen as acceptable. 

The truth is campaigners, lobbying groups, support groups and charity boards are all lacking in diversity. With the notable exception of journalist Saba Salman, nearly all the leading voices in learning disability advocacy are white. Much as I welcome their input, unless policy-makers start listening to other voices, we will never succeed in bringing about much needed change to the life chances of all people with learning disabilities. 

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And research shows that, when grassroots organisations from ethnic minority groups apply for funding, they are regularly frozen out. Even when they succeed, the amount is derisory and for very short-term projects. It feels almost impossible for us to secure support from anywhere.

The fact is that people like my Harry face enormous challenges regardless.

Punjabi families take great pride in announcing the birth of a boy, but with Harry, the celebrations were muted. He and I were shunned by people I had known most of my life. The stigma, shame and rejection are devastating. Sixteen years on, these attitudes are gradually changing and I campaign within the community for better attitudes and better practice.  But there’s so much to be done.

But when the narrative is dominated by people who look different, who don’t share our experiences, or who need entirely different interventions and support mechanisms, the system will continue to fail. As the great Palestinian-American academic and literary critic Edward Said reminds us, the stories of people from the East have been dominated by people from the West. Surely, just occasionally, our voices should also be listened to?

People from ethnic minorities need to be empowered to emerge from the shadows in the formulating of public policy. Politicians, civil servants and commentators must move beyond describing us as ‘hard to reach’ – when the simple truth is that we are ‘easy to ignore’. Without the voices of people like us, families will continue to feel isolated, neglected and forgotten. We deserve better. 

Until we accept that my gorgeous, Bollywood-obsessed 16-year-old son has the same value as any other learning-disabled person – as all other people – the endless sleepless nights worrying about a life being neglected, ignored and cut short will continue to leave me close to despair.


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