Seeing the Person behind the disability

Late in June, the Equality and Human Rights Commission (EHRC) abolished the role of Disability Commissioner. This happened 36 hours before Lord Shinkwin, newly appointed to the role, was due to hold his first board meeting. Shinkwin explains that EHRC’s chair, David Isaac, had declared the role to be ‘redundant’.

The rights of disabled people are often overlooked. Countries rightly cheer the great feats of athleticism, persistence and courage displayed at the Paralympics or at this year’s World Para Athletics Championships held in London. However, inequality continues to exist. According to a 2014 Scope report, 85% of the British public believe that disabled people face discrimination.

Internationally, while estimates vary, between 650 million to 1 billion people suffer from a disability of some description, which represents 10 to 15% of the global population. The United Nations Convention of the Rights of Persons with Disabilities defines a person with disability as:

‘those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’

Therefore, the aim of the disability rights campaigners is simple: for people with disability to be viewed and treated equally and as valued members of society. They share in the struggles that racial minorities and women go through in their march for equality. The mid-20^th century saw certain advances in the UK. The disabilities caused by WW2 meant greater awareness and desire to do something, which eventually led to changes such as the closure of asylums. However, a UN Committee on the Rights of Disabled Persons (CRPD) report in 2016 found that ‘grave and systematic violations’ continue to occur, and certain welfare reforms may have aggravated the current situation.

According to the EHRC in their 2016 report, Being Disabled in Britain: A journey less equal, enormous burdens are placed on disabled people in areas such as education, work, standard of living and healthcare. The material deprivation rate is a useful indicator to explore this, as it is the measure of an enforced lack of items relating to living conditions, such as ability to afford basic requirements, possession of consumer durables, housing conditions etc. It is at 59% for families with children and a disabled member, in contrast to 36% for the general population. This suggests that families with a disabled member tend to struggle more financially than the UK average. Rates of disability tend to be highest within deprived and poorer areas, as a result of the relative lack of ability to get jobs and social allocation policies.

There are many reasons for society overlooking disabled rights, two of which are: culture and the ease of ignorance.

It is a culture that idolises health and wellbeing which focuses on the disability rather than the person with the disablity. The language we use can have an impact on how much we include disabled people. Terms such as ‘defect’ and ‘normal’ can leave disabled people feeling diminished, abnormal and excluded. We need to be careful of the nuances and negative connotations which the language we use can have. For instance, a mother of a baby with Down’s syndrome is currently calling for a change in the language of prognosis of Down’s from ‘risk’ to ‘chance’. Though small, it is the start of an effort that could restructure societal views.

Society finds it easier to ignore the rights of disabled people, compared to other groups in society. Governments make assumptions that disabled people are not able to speak up for their rights as much as others so more easily defer action on granting them rights. The fault and stigma is usually attached to the disabled person, not to societal shortcomings. A move to a ‘social model of disability’, where the onus is on society to make places and jobs more accessible and fully cater for their disabled population, would be profound. It would mean that disabled people become a group fighting for equal rights throughout all of society, much like the civil rights movements of the past.

Yet far more disturbing forces lie on the horizon for the UK. Enter John Hardwig, whose 1997 essay ‘Is there a Duty to Die?’ has provoked a long controversy. The ‘fundamental insight’ of the duty to die, he says, is:

‘when continuing to live will impose significant burdens — emotional burdens, extensive caregiving, destruction of life plans, and, yes, financial hardship — on your family and loved ones’

In societies where assisted suicide or euthanasia is legalised, this can create pressure for disabled people to agree to their own termination, even if it is not what they want. In February a Dutch doctor who euthanised a woman with dementia while she struggled against it was acquitted. It shows how prone to abuse current euthanasia laws are in countries that have legalised it. The major disability rights advocacy groups in the UK, such as Scope, Disability Rights UK and Not Dead Yet, are all against a potential change in the law, because of this danger and the attitudes which drive it. Safeguards are often inadequate or ignored, which often can lead to their removal further down the line. Whether this is likely to change in the future is doubtful. This may also be a product of ageist tendencies in Western society, which also creep into care for older people with disabilities.

Inspirational stories show how people with disabilities are able to live fulfilling lives. One mother explained how she was not congratulated on the birth of her son Dylan, but told ‘We’re sorry, your son has Down’s syndrome’. A devaluing of the lives of children born with disabilities is nothing new (for further discussion, see here). But disabled people often tend to see their quality of life as good. Technology is now showing this for people paralysed with locked-in syndrome. Meanwhile, Dylan is flourishing in Year 9 at school and has made the Down’s Syndrome GB swimming squad. People with disabilities can live meaningful and joyful lives.

Jesus had great love for people seen by society as diseased or disabled as shown in his healing of Bartimeus. The people around him were angry when he cried out to Jesus (Mark 10:48). But Jesus comes over and asks him ‘What do you want me to do for you?’ Bartimeus replies, ‘Rabbi, I want to see’ (v.51). It shows caring, but also a sense that Jesus sees him as a human being. This respect of disabled people is something which society needs today.

Riven by abuses and inequality, champions for disabled rights are needed now more than ever. Here’s hoping people like Lord Shinkwin (who is currently pushing forward a bill to promote disability equality in regards to abortion) continue to speak up, even if others seek to oppose and belittle them.

André Wolgar is a Junior Researcher with CMF’s Advocacy Team