The organisations we work with increasingly require their inclusion strategies to reach beyond the UK and even Europe. Whether businesses have a ‘fixed’ presence in multiple countries, or have employees who are based in or frequently travel to other countries for work, never have organisations had to have a more transnational awareness of disability as it affects business.
The fascinating element of this is, of course, that such a development means we need to think beyond ‘just’ disability; that is, disability does not exist in isolation of its surrounding social context. Race, culture, religion and belief are all social conditions upon which ‘disability’ is culturally perceived, interpreted, and ‘practiced’.
Some interesting statistics emerged from the American Association of People with Disabilities (APPD) earlier this month on the inclusion of disabled people in the US workforce. The initial statistics are somewhat similar to ours in the UK: around 20 per cent of people in America have a disability, and there is a huge gap between disabled and non-disabled people in work. But the statistics on workplace practices in the US are cringing: less than 30 per cent of employers have policies and practices in place to retain disabled employees, and only 40 per cent of employers ask candidates if they need adjustments (‘accommodations’ in America) when they apply for a job or come to an interview. It is no wonder that the employment of disabled people in the US is at an “all time low”. The AAPD reminded us that “Employment is the cornerstone of the American dream”; yet people with disabilities are not accessing this part of the ‘dream’ that is so inherent in the cultural history of their country.
Moving eastwards, perhaps the most concerning piece of news at the beginning of this year was learning of the draft ‘Delhi Rights of Persons with Disabilities Rules’ which, at the time of writing, are planned to form part of India’s Rights of Persons with Disabilities Act (2016). The ‘Rules’ say, “No person with disability shall be considered to be a subject of research except when the research involves physical impact on his [sic] body.” Disability rights activists in India are voicing concern over these new ‘rules’, as confirmation of these ‘rules’ will mean social research with disabled people can no longer take place; only medical research is permitted. Disability rights activist in India, Satendera Singh, said earlier this year: “This ‘controversial’ rule on research needs to be deleted. The rules are problematic as they focus on the medical model of disability and excludes qualitative research.”
This seems odd, since India’s Mental Health Care Act, only passed in 2017, explicitly allows research with people with mental health conditions. Not only that, the Mental Health Care Act is also admirably clear on details such as data control, participating consent, and even down to what can be written in research case notes.
This has huge consequences. Social and academic research is crucial for understanding disabled peoples lives, and for providing a process through which disabled people’s voices are represented in published material, in scholarship, and in policy-making. This type of research is how we plan, strategize and evidence how we change things in society for disabled people. Social scientists have long advocated that those who are not ‘studied’ are essentially those who remain ‘unknown’; in the UK, we have a large (and increasing) number of impactful academic disability research centres dedicated to understanding disabled people lives and advising policy makers on disability issues. We have also made strides in getting disability issues into the public domain via huge social research projects conducted by, for example, the Equality and Human Rights Commission on critical elements of disabled people’s lives, from experiencing hate crime to experiences and participation and UK society – all of which have fundamentally relied on qualitative insight and have published ‘real life’ voices of disabled people. Such outcomes are just not possible without social research. Business Disability Forum also conducts a vast range of social research for a range of purposes, from informing our Government policy work, to carrying out research in organisations to (for example) understand barriers to progression or employee engagement.
Prohibiting this type of research with disabled people is a sure way of moving backwards in understanding the lives of disabled people and keeping their experiences silenced. Either that, or clinicians and scientists (examples of professionals named in the ‘Rules’ as being allowed to undertake medical research with disabled people) will be writing disabled peoples lives for them, instead of with them – the very opposite to the “nothing about us without us” ethos that runs deep in the veins of disability rights in the UK, and increasingly beyond.