Am I an ally?

A conversation about power in the relationships between disabled people and their personal assistants, got me thinking about privilege and why it’s a concept rarely talked about in social care.

White privilege was first popularised as an idea by Peggy McIntosh, a (white) academic at Wellesley college in the US, in a 1988 article about white and male privilege, which contained 46 examples such as “I am never asked to speak for all the people of my racial group” and “I can turn on the television … and see people of my race widely and positively represented”. McIntosh says she began by asking herself, “What do I have that I didn’t earn?” That’s a question which makes some white people very uncomfortable. People like to feel that they have earned their achievements and rewards through skill and hard work. Some people hear, or choose to hear, talk of privilege as either an accusation of racism, or as the suggestion that they never worked hard, or that they or their forebears have never struggled. As Prof Kalwant Bhopal of Birmingham and Harvard Universities has written, privilege is not as simple as that. There are layers of privilege and it’s never the entirety of an individual’s story, but it is part of understanding the ‘myth’ of society being post-racial.

One of the reasons I think that privilege touches such a nerve for some people who have it, is that it’s not something you can choose, or choose not to have. One can only be aware of it and adapt assumptions and behaviours accordingly. This is perhaps one of the reasons it’s such a useful, uncomfortable concept: for people used to the privilege of being defined by their individuality, it contains, if only in the most moderate way, the experience of being defined as a member of a group you didn’t choose to join.

So why don’t we hear power imbalances and privilege talked about more in the disability sector? It’s not because no disabled person has ever considered it. Academic, writer and disability activist, Cara Liebowitz, gave five examples of non-disabled privilege in a 2016 article for Everyday Feminism. Julie Weiner lists 50 privileges in Odyssey online magazine and Jessica Niziolek discusses how helpful or otherwise the concept of privilege is in relation to disability at Abilities.com.

Perhaps I can’t recall this idea being raised in two decades working in the social care sector, because I haven’t been listening  – poet and activist Andrea Gibson says, “Privilege is never having to think about it.” But it’s telling that the references I found for this article were not from national social care publications, platforms or ‘official’ policy documents: discussion of this idea feels like it’s been kept on the fringes. I called my book, “Escaping the invisible asylum” because  power structures – through hiding in plain sight – can sometimes be too big to see..

There are many areas of society in which privileged people ignore or deny the existence of power imbalances. But in health and social care, privilege is not only routinely ignored, but also the people with most power get to enjoy our privilege, unchallenged, and even have it codified into job titles, power structures and a whole language and professional culture: it is the (usually non-disabled) professionals who are the ones talked about as making ‘difficult decisions’, carrying out the hard work, dealing with ‘complexity’ and challenges (‘challenging behaviour’). Who earn qualifications in helping other people to live their lives.

This is not to demean or undervalue the work which people do to support others, nor the skill and dedication with which most do it. It is vital, skilled, often tiring, work, which improves and often saves lives. It is under-valued and I know how frustrating it can be to feel held to the highest standards and constantly questioned or challenged about work which is difficult, underpaid and unloved, even when done more for love than money. But we talk the language of empowerment and enabling, without thinking about privilege. McIntosh wrote that “whites are taught to think of their lives as morally neutral, normative, and average, and also ideal, so that when we work to benefit others, this is seen as work that will allow ‘them’ to be more like ‘us.’” Replacing “white” with “non-disabled people” in that sentence would result in a description of the unconscious assumptions which still underly too much support for people with learning disabilities, for instance, where, despite recognition of the value of neuro-diversity and other activist-led campaigns, non-disabled workers can still feel their role is to support appropriate behaviour, which people with learning disabilities aren’t invited to help define. In contrast, CHANGE human rights organisation is one of a small number of organisations which employ people with learning disabilities in leadership positions, through a c0-working approach in which disabled and non-disabled people share a role on equal pay.

In the context of racial oppression, Roxane Gay wrote in a Marie Claire article, “We need people to stand up and take on the problems borne of oppression as their own.” This describes the first of four ways in which, according to the Guide to Allyship, privileged people can stop trying to lead, but instead walk alongside or follow people who lack that privilege

• Take on the struggle as your own.
• Stand up, even when you feel scared.
• Transfer the benefits of your privilege to those who lack it.
• Acknowledge that while you, too, feel pain, the conversation is not about you.

In social care we talk about empowering disabled or older people and enabling them, but neither of those describes being an ally. We talk about the transfer of skills or knowledge rather than of privilege. I’ve seen great support workers and social workers take on the oppression they witness – taking that injustice personally, recognising it “as their own”. They often have to do this despite the system and culture in which they work though, not with its blessing, and as a result, they can risk being criticised for their lack of ‘objectivity’ or ‘professionalism’.

In contrast, the Shared Lives movement takes it as read that the person with whom a household chooses to share their homes and lives “is just one of the family”. This willingness to make it genuinely personal has always felt to me one of the most radical choices Shared Lives carers make: to be alongside the person they support, even if that means stepping outside of usual boundaries of ‘the system’, with the risks that that can bring if something goes wrong. I see great Shared Lives carers and their families following those four tenets of allyship in relation to the people they share their homes with, for whom years of oppression and exclusion are often just as great a challenge as the impacts of learning disabilities, mental ill health or other support needs. They invariably talk about something else as well though: being prepared to learn from the person who enters their lives, to recognise what they gain from their role as well as its challenges. Allyship as a privilege.

I often ask myself, “Am I being a good leader?” The question I’m going to be asking more of in 2019 is, “Am I an ally?” The answers won’t always be comfortable.

(This might be a good time to say that the platform of this blog, such as it is, is always open to anyone with lived experience who wants to share their views or experiences. Or if there is another way I can help you get your voice heard, please get in touch.)