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You can find the current article at its original source at https://www.theguardian.com/society/2018/aug/21/sam-clark-abuse-of-learning-disabled-people-will-not-stop-until-we-all-matter-equally
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| Sam Clark: ‘Abuse of learning disabled people won’t stop until we all matter equally’ | Sam Clark: ‘Abuse of learning disabled people won’t stop until we all matter equally’ |
| (about 1 month later) | |
| Having ‘low ego’ is not something most chief executives are known for. But it was in the job description of the role Sam Clark successfully applied for as the inaugural chief executive of the campaigning organisation Learning Disability England. The successful candidate, “will be collaborative and ‘low ego’; motivated primarily by others succeeding over achieving their own personal agenda”, it read. | Having ‘low ego’ is not something most chief executives are known for. But it was in the job description of the role Sam Clark successfully applied for as the inaugural chief executive of the campaigning organisation Learning Disability England. The successful candidate, “will be collaborative and ‘low ego’; motivated primarily by others succeeding over achieving their own personal agenda”, it read. |
| Clark says she was attracted to a job helping different parties fight for a single cause. Collaboration and unpretentious leadership are key at LDE, the only membership group uniting the learning disability movement. Founded two years ago by the self-advocate Gary Bourlet, so that people with learning disabilities could have a voice in improving the services they depend on, LDE’s more than 600 members (which include individuals and organisations) share a goal to improve the lives of individuals who need support. | Clark says she was attracted to a job helping different parties fight for a single cause. Collaboration and unpretentious leadership are key at LDE, the only membership group uniting the learning disability movement. Founded two years ago by the self-advocate Gary Bourlet, so that people with learning disabilities could have a voice in improving the services they depend on, LDE’s more than 600 members (which include individuals and organisations) share a goal to improve the lives of individuals who need support. |
| Clark worked with Bourlet when she led Inclusion North – a not-for-profit membership organisation promoting learning disabled people’s involvement in health and social care. She noticed how professionals working in the field had “maybe not sat and actually worked with learning disabled people”. | Clark worked with Bourlet when she led Inclusion North – a not-for-profit membership organisation promoting learning disabled people’s involvement in health and social care. She noticed how professionals working in the field had “maybe not sat and actually worked with learning disabled people”. |
| People with learning disabilities face gross inequality in life and death | People with learning disabilities face gross inequality in life and death |
| Clark believes LDE’s main impact so far has been promoting the perspectives of people with learning disabilities in the media and forging stronger, direct links between them and the commissioners and providers of services: “So it isn’t just care providers talking.” | Clark believes LDE’s main impact so far has been promoting the perspectives of people with learning disabilities in the media and forging stronger, direct links between them and the commissioners and providers of services: “So it isn’t just care providers talking.” |
| She says LDE’s role in campaigning to resolve the row over the back pay for care workers’ sleep-in shifts, in order to try to end the uncertainty, shows how people and their families can participate in debates on issues that concern them. | She says LDE’s role in campaigning to resolve the row over the back pay for care workers’ sleep-in shifts, in order to try to end the uncertainty, shows how people and their families can participate in debates on issues that concern them. |
| Clark, who took up her job in July, says that over the next two years, LDE expects to be working on four key areas: funding for housing and support, making self advocacy stronger, improving housing choices and improving social care. | Clark, who took up her job in July, says that over the next two years, LDE expects to be working on four key areas: funding for housing and support, making self advocacy stronger, improving housing choices and improving social care. |
| Despite being set up as a national, user-led, self-advocacy group, it has recently merged with the charity Housing and Support Alliance to include care providers. Clark explains: “There was a shared vision around bringing together allies from across the learning disability world to create a louder voice with learning disabled people and their families.” | Despite being set up as a national, user-led, self-advocacy group, it has recently merged with the charity Housing and Support Alliance to include care providers. Clark explains: “There was a shared vision around bringing together allies from across the learning disability world to create a louder voice with learning disabled people and their families.” |
| But isn’t there a danger that having care providers as members will dilute the voice of individuals? And what happens if one of the care providers is exposed for a failure of care? Clark thinks not: “I’d hope to have a relationship with someone in that organisation. I’d ask, ‘Can I talk to you? Can we help? Are people and families involved [in your response]?’ It’s also a transparency issue – we’d say, ‘You know we’re going to respond, because we’re going to be consistent.’” | But isn’t there a danger that having care providers as members will dilute the voice of individuals? And what happens if one of the care providers is exposed for a failure of care? Clark thinks not: “I’d hope to have a relationship with someone in that organisation. I’d ask, ‘Can I talk to you? Can we help? Are people and families involved [in your response]?’ It’s also a transparency issue – we’d say, ‘You know we’re going to respond, because we’re going to be consistent.’” |
| She believes that “until we all matter equally”, abuse will continue, as will institutionalisation and health inequalities. Referring to the recent NHS review that revealed how poor care contributed to some deaths of learning disabled people, Clark says attitudes are partly to blame: “We do need to think about the fact these [people in NHS care] are our friends, our neighbours and our family members.” | She believes that “until we all matter equally”, abuse will continue, as will institutionalisation and health inequalities. Referring to the recent NHS review that revealed how poor care contributed to some deaths of learning disabled people, Clark says attitudes are partly to blame: “We do need to think about the fact these [people in NHS care] are our friends, our neighbours and our family members.” |
| One of Clark’s family friends is autistic; she has the 22-year-old in mind in her new role: “He can’t get a job, he can’t translate work experience or voluntary work into paid work. He wants to contribute – he hates not feeling useful.” | One of Clark’s family friends is autistic; she has the 22-year-old in mind in her new role: “He can’t get a job, he can’t translate work experience or voluntary work into paid work. He wants to contribute – he hates not feeling useful.” |
| She is disappointed by delays to the long-awaited social care green paper, due this autumn, and its “parallel work stream” on working-age disabled adults. What she wants to see in it is a focus on the vital role of social care in its own right, because it does not exist just to “prop up the NHS”, she says. “It’s about being able to get good housing or having support in your life that helps you keep in touch with mates, or helps you learn things.” | She is disappointed by delays to the long-awaited social care green paper, due this autumn, and its “parallel work stream” on working-age disabled adults. What she wants to see in it is a focus on the vital role of social care in its own right, because it does not exist just to “prop up the NHS”, she says. “It’s about being able to get good housing or having support in your life that helps you keep in touch with mates, or helps you learn things.” |
| She grew up in the village of Birstall, West Yorkshire. Life in a small, close-knit community left an indelible impression: “I grew up with idea of community and being connected … the strength, safety and sense of belonging and security.” It has informed her 27-year career, which has focused on helping people who need support to live independently. Today, she lives just miles from her childhood home. | She grew up in the village of Birstall, West Yorkshire. Life in a small, close-knit community left an indelible impression: “I grew up with idea of community and being connected … the strength, safety and sense of belonging and security.” It has informed her 27-year career, which has focused on helping people who need support to live independently. Today, she lives just miles from her childhood home. |
| Clark says it is a “disservice” that society fails to recognise that learning disabled people need to make a contribution: “We all bring gifts and talents, and I think it would be brilliant if we could understand that’s the case for everyone.” | Clark says it is a “disservice” that society fails to recognise that learning disabled people need to make a contribution: “We all bring gifts and talents, and I think it would be brilliant if we could understand that’s the case for everyone.” |
| Sign up for the Society Weekly email newsletter | Sign up for the Society Weekly email newsletter |
| Curriculum Vitae | Curriculum Vitae |
| Age 47. | Age 47. |
| Lives Wakefield. | Lives Wakefield. |
| Family Married. | Family Married. |
| Education Richmond House, Leeds; Fulneck School, Leeds; Durham School; University of Leicester, BA in psychology and English; Cass Business School, diploma in management in the voluntary sector. | Education Richmond House, Leeds; Fulneck School, Leeds; Durham School; University of Leicester, BA in psychology and English; Cass Business School, diploma in management in the voluntary sector. |
| Career July 2018: chief executive, Learning Disability England; 2016-18: chief executive, Local Area Coordination Network (community interest company to make local services in England and Wales more personal and efficient); 2006-16: chief executive, Inclusion North (not-for-profit membership organisation promoting inclusion of learning disabled people); 2000-06: regional manager then operations director, KeyRing Living Support Networks (helping people who need support to live in the community); 1996–2000: team leader then acting area manager, Nacro Lincolnshire; 1995-96: senior care worker mental health supported living, Lincolnshire county council social services; 1994-95: tenancy support worker, South Yorkshire Housing Association; 1991-94: project worker then project coordinator Guildford Cyrenians (hostel and supported living). | Career July 2018: chief executive, Learning Disability England; 2016-18: chief executive, Local Area Coordination Network (community interest company to make local services in England and Wales more personal and efficient); 2006-16: chief executive, Inclusion North (not-for-profit membership organisation promoting inclusion of learning disabled people); 2000-06: regional manager then operations director, KeyRing Living Support Networks (helping people who need support to live in the community); 1996–2000: team leader then acting area manager, Nacro Lincolnshire; 1995-96: senior care worker mental health supported living, Lincolnshire county council social services; 1994-95: tenancy support worker, South Yorkshire Housing Association; 1991-94: project worker then project coordinator Guildford Cyrenians (hostel and supported living). |
| Public life Former trustee of In Control and Pyramid of Arts; board director of Positive Support for You. | Public life Former trustee of In Control and Pyramid of Arts; board director of Positive Support for You. |
| Interests Theatre and community arts, outdoor swimming, local fetes and festivals, contributing to local efforts to be inclusive and welcoming. | Interests Theatre and community arts, outdoor swimming, local fetes and festivals, contributing to local efforts to be inclusive and welcoming. |
| Learning disability | Learning disability |
| The Society interview | The Society interview |
| Disability | Disability |
| Charities | Charities |
| Voluntary sector | Voluntary sector |
| Health | Health |
| Social care | Social care |
| interviews | interviews |
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