The handicapped; the deaf and dumb; the feeble minded; the blind; the imbecile and the cretin – these are all terms used to describe disabled people during the Victorian era in which many were usually reliant upon charity, and often hidden away in institutions. Recently journalists have warned that the increase in food banks marks a “return of a problem some might have thought we banished after the Depression, if not the Victorian age”. Guardian journalist, Jonathan Freedland writes “This was why Britons sought to put the Victorian era of charity behind us, why we decided that sometimes a state service is better: because there is less shame in claiming a nationally mandated benefit than in going to a church hall, being handed a food parcel and having to nod your head and say thank you.”
The prospect of welfare provision being based upon the Victorian era of ‘charity’ is a gruesome thought for disabled people. But we wouldn’t actually have to ‘time travel’ that far back to experience a considerable reduction in our quality of life. The recent WOW (War on Welfare) campaign, championed by disabled actress and comedienne Francesca Martinez, also raises concerns around the regressive effects welfare cuts will have on disabled people. Martinez warns of disabled people falling into destitution and being subjected to humiliation. With 105,000 signatures, the WOW petition has successfully pressurised parliament into agreeing to an independent cumulative assessment of the impact of changes in the welfare system on sick and disabled people, their families and carers. I mentioned some of these cuts in an earlier blog.
Quite rightly there has been a lot of focus on the cuts to income replacement benefits for those who either cannot find work or are too sick to work. But it’s worth remembering that it wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits didn’t hold the same stigma as the income replacement benefits and as such revolutionised the way disabled people participated and contributed to society – Mobility Allowance assisted with the costs in getting around; and Attendance Allowance helped to pay for the additional costs related to living in a disabling society. They were often used to pay for life changing specialist equipment, such as “invalid carriages”, now mobility scooters. Twenty years after their introduction these two benefits merged to form DLA (Disability Living Allowance). DLA, like its two predecessors, is based on perceived need and is not, and never has been, an ‘out of work’ benefit.
Simultaneously, the 1970s also brought about greater provision of community care and rights for disabled people through the 1970 Chronically Sick & Disabled Persons Act – a ground-breaking piece of legislation described at the time as ‘a Magna Carta for the disabled’. Local authorities were responsible for providing welfare services and practical support for people in their own homes. A code of practice was introduced to increase the general accessibility of public buildings, requiring local authorities to provide parking and accessible toilets for disabled people. Disabled badges for cars were introduced with exemptions for parking and other access. Provision was also made for “invalid carriages” to be used on public roads, footpaths and pavements. The 1970 Act also encouraged the representation of people with knowledge and experience of disability on local authority committees and other public bodies.
In the years since, further rights based legislation has extended the provisions of the 1970 Act. These include: The Mental Health Act (1983), The Disabled Persons Act (1986), Disability Discrimination Act (1995), The Community Care Direct Payments Act (1996) and The Equality Act (2010).
Last year the current Government attempted to remove the legal duties established by the aforementioned Acts – including the Chronically Sick and Disabled Persons Act – describing a council’s duty to care for disabled people as a ‘burden’. Although this was unsuccessful (for now), local authorities are still struggling to meet these legal duties because they are facing the biggest cuts in living memory. These cuts are particularly alarming following the Government’s decision to close the Independent Living Fund – a national pot of money ring-fenced to provide care for the most severely disabled people. The government are also replacing Disability Living Allowance with a new benefit – PIP (Personal Independence Payment). Whereas the move from the 1970s Attendance and Mobility Allowances to DLA widened the scope of people eligible for the benefit, PIP will drastically reduce the range.
Meaning these crucial pillars underpinning our ability to be independent are under serious threat. Lyn Levett’s story below explains what life was like for disabled people before these pillars were put in place.
The government have repeatedly claimed that because disabled people now face fewer disabling barriers, they need less support. Whilst it may be true that access to public services has improved, the fact remains that many of us still cannot access these services without additional support. The DLA mobility component, for example, has never been a financial substitution for ramps or lifts to public transport services. This component has been awarded for a range of impairment related needs, most notably one’s ability to get to these services in the first place. The new, rather ridiculous, criteria for being awarded the equivalent PIP could potentially result in the repossession of an estimated 90,000 motability cars and scooters. This is a far cry from the allowances introduced in 1970s, which enabled people to buy “invalid carriages” to gain access to their local community.
The government have also made similar unfounded statements to justify other welfare reforms that reduce support for disabled people – and of course other marginalised groups in society. I really do hope the WOW campaign is successful because the thought of turning the disability equality clock back 40 years is a frightening enough prospect, let alone back to the Victorian era.
Lyn Levett’s Story
Lyn was born in 1960 and has a significant physical impairment (cerebral palsy). She is a musician, music producer and regularly performs with the world renowned British Paraorchestra. Launched in 2011 the British Paraorchestra played alongside Coldplay at the 2012 Paralympic ceremony. They have also performed the National Anthem at Buckingham Palace. As a solo artist, Lyn has recently been commissioned to produce a score for a documentary about the Spanish paracyclists. Paraorchastra Conductor, Charles Hazlewood describes her compositions as the “most dizzyingly brilliant electronic music”.
Lyn is a credit to our nation – but her achievements wouldn’t have been possible without the community care support she received later on in her life. Despite her music talent and intellect, Lyn left school without any qualifications and had little hope of an independent life. She attended a special needs boarding school during her formative years, and subsequently ‘lived’ in a number of different residential homes as a young adult. The homes, run by the charity Scope, were very structured – The smaller sheltered accommodation training places, also run by Scope, were not much of an improvement. In one training place, Lyn recalls that the managers were using the paid staff to do their own domestic jobs instead of providing residents with care.
During the early 1990s Lyn managed to escape from these institutions and moved into her own home. This was made possible with the help of improvements in community care – improvements the current government want to reverse. It was during this period that she had the opportunity to explore and develop her musical talents. Lyn is terrified the welfare reforms are going to push disabled people back to a time where they were shut away in institutions with very little choice and control. And she knows only too well what that is like.
“It wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits revolutionised the way disabled people participated and contributed to society”
“Before the 1990s people like me had no choice about who provided us with personal care, when we got up or when we ate. There was even a ‘bath list’. We were conditioned not to think for ourselves and when we did we were often penalised for making suggestions” Lyn Levett, Musician – British Paraorchestra