Editor’s Note: The term ‘disabled’ in this article, is used exclusively within quotes from others or to describe blanket terming by society – it is ‘not’ phraseology expressed or used within the house style of Barriers to Bridges Magazine.
Often what equates to diversity in the minds of many, only addresses polar opposites or leaves out an entire community of protected characteristics – keeping them at arm’s length or at best in the back of the queue of credibility and acknowledgement. From the pledge of a politician making a stand for diversity and inclusion, to job ads, the last to be considered is far too frequently, people with additional needs or more commonly blanket termed, the ‘dis-abled’. This not only reflects an entire community’s place within the social pecking order, the truth could not be clearer within the parameters of diversity.
“Why does Disability have such a low profile? Why is Disability still attached to able vs disable, capable vs incapable?” Christopher Catt
As gender and racial inequality have made huge strides in the last hundred years or so, with misogyny and race-related crimes laid bare in recent decades, people with additional needs, whether physical, cognitive or sensory, seen or unseen, have been eclipsed and left behind within the media, literature and prominent campaigning.
As a journalist and avid reader of political debate, social constructs or even a good dose of pop culture, I’ve noticed in the period following the brutal murder of George Floyd and others in the U.S – no stone has been left unturned to emphasise the raw deal handed to people of colour, from police departments, city councils, right up to the judicial system – people of colour have rightfully challenged how they’re treated, because of the colour of their skin. Likewise, instances of misogyny have seemed to become ‘normalised’ from police departments, secondary schools or out on the streets – women and girls are still targets of harassment, subjugation, or violence. Yet, how high is the profile of people with additional needs raised when it comes to a steady obstacle course of barriers faced in the lives of this diverse section of society? Where’s the #LivesWithDisabilitiesMatter movement? Despite the struggles, within the world of sport, fashion or professions, both the feminist and racial inequality movements, have celebrated many prominent figures for landmark achievements or conquering stereotypes. For example, recently in Cardiff, a statue of Betty Campbell was erected to commemorate her achievements as a woman of colour defying poverty, as the first black head teacher in Wales. In Sheffield the Women of Steel statue acknowledges the unsung female factory workers keeping the industry afloat during wartime, as other women suffragettes championed the early women’s movement. Yet when a statue of Alison Lapper Pregnant, an artist with no arms and shortened legs, was unveiled in London’s Trafalgar Square, Rachel Cooke, of The Observer from the outset wrote of her reaction as: “Too deliberately controversial, too feebly didactic… – rather banal.” Fortunately, the public’s reaction proved Cooke wrong.
According to Leonard Cheshire, a national organisation, 1 in 5 or 14.1 million people in the UK, have additional needs of some kind. This entire grouping has historically faired as a kind of under-class in what is considered institutionalised oppression. It starts in the formative years, where varied home experiences or schooling, is where expectations are lowered and pupils with additional needs are not encouraged to dream as their counterparts. What often manifests, is a steely determination to ‘prove them wrong’.
From the very top institution of British society, first cousins of Queen Elizabeth II, who had learning difficulties, were hidden in an attempt to airbrush their existence, in the not too distant past. The above article highlights a hidden truth kept from public view for years, how Nerissa and Catherine Bowes-Lyon were only widely discovered when the programme The Crown focused on how they were shut away, as not to tarnish the façade of the royal family.
Particularly for people with mental health conditions, in the 17 and 18th centuries, asylums often shackled or physically restrained inmates, as the goal was to keep them incarcerated for their poor mental health status – life was harsh, as many ended up in workhouses or prisons. However, by the mid-1800s reformists such as Harriet Martineau or Samuel Tuke, influenced a more human approach to institutionalisation – improving an inmate’s wellbeing. Unfortunately, asylums became overcrowded regressing to padded cells or sedation. Under such regimes, it’s impossible to see how anyone could document or describe their surroundings. The dark history of Glasgow’s Lennox Castle and places like it have been discovered, but delving into the historical institutionalisation of people with additional needs is murky as there is precious little literature recording how people existed. Despite great beginnings, the horrors of Lennox castle, along with any resistance to the abuse, were revealed as late as the 1980s. This contrasts with the wealth of literature spanning the history and progression of the women’s movement and struggles against racism, respectively. From the Pankhursts, Hariet Tubman to Paul Robeson – authors, artists and biographers are abundant in these movements. Alison Lapper, previously mentioned, wrote a book entitled My Life in my Hands ISBN: 9781416511014 – where an extract says: “I think it’s wrong for me to complain that people don’t understand disability and then refuse to talk about my personal life. Telling my story is the best way I know to make issues I care about understood.”
Any progression of human rights has been through top-down legislation or policy, as there are few figures championing resistance to societal attitudes resulting in emancipation. The Disability Discrimination Act, with all its white papers and revisions, was a late bloomer to the Race Relations Act or Women’s Inequality Acts. In studying how this late legislation was pieced together, during my academic years, what came to light was the limited input by people with additional needs.
Dr Natasha Hirst, a 42-year-old Cardiff-based freelance photographer, who is deaf, said: “If an organisation already lacks disabled people, then there are fewer people who are clued up about the issues to raise them in the first place. I think this is partly why diversity initiatives tend to focus on higher profile diversity issues such as gender and race. This points to the importance of having disabled people in leadership and decision-making roles.” This podcast out of Ms Magazine, an online, U.S-based feminist publication, focuses on being of colour in public life, just one of a multitude of features coming to light in the post George Floyd period, but where is the encouragement or accounts of people with additional needs in policy-making or leadership roles?
Barriers and Battles, Sound Bites and Situations
There are of course blogs permeating the internet now, telling of the daily diet people face with prejudice, stereotypes or assumptions of what we cannot manage in navigating life – trying to maintain ‘normalness’. For example, I have written in anger, Discrimination to Walk. These closed doors are based on the presumption, those with visible differences either must be wrapped in cotton wool or need an easy walk with no steps or obstructions. The upshot is a constant pattern of patronising remarks or mindsets, literally testing anyone’s patience to go about daily life as others do.
Sitting in a David Lammy led seminar within the 2019 Labour party conference in Brighton, the emphasis was on a lack of diversity within the legal profession. As I listened, I became increasingly irritated at the lack of consideration given to legal representatives with additional needs. So, I spoke up and brought it to the attention of the debate – that there is more to diversity than gender or race, only to receive an ‘oh yeah of course’ response.
Listening to a Green party candidate for Police and Crime Commissioner in Bristol, a woman of colour gave an impassioned speech in the run up to local elections in May, 2021. She highlighted the need for better representation or relations with communities of colour or women, but listening to her manifesto, I was compelled to write to her – drawing attention to the lack of consideration awarded the community of people with additional needs, but no response.
In 2011 during the onslaught of austerity, I went down to the Hardest Hit demonstration, where mainly people with additional needs were protesting, how the hardest hit would be those on benefits. I remember a wheelchair user stressing to politicians, ‘you’re hurting the weak’ – I thought to myself, why are you characterising us as inherently weak or vulnerable? You’re not doing us any favours mate. It seems people with additional needs, only protest inequities when benefits are being cut. There is no challenging the pay gap still faced by workers with additional needs in the same way women or people of colour have stridently campaigned for decades – not to mention the rife discrimination faced when entering the job market in the first place.
Christopher Catt, a 56-year-old entrepreneur with a visual impairment, known professionally as the Enabled Entrepreneur,(director of the Life Coach station) said: “If you spend some time in Facebook Groups, you mostly read posts stating how unfair life is when ‘entitlement’ is confused with a mythical ‘right of entitlement’. In many years of work previously working with Disabled Job Seekers many would see their benefits as a living. Working was something for other people.” Benefits have their place for the additional costs incurred as pointed out by Lydia Wilkins. So, do campaign groups like Disabled People Against the Cuts do anyone any favours or put forward an empowering argument? Do they perpetuate what Catt dubs ‘learned dependency’?
Job ads traditionally show reluctance to ticking the disability box after gender, race/ethnicity, or LGBTQ+ to ‘the other’ hinting at special needs, but this has begun to change in recent years. However, it varies between public and private sectors whether a company fosters equal opportunities – it also depends on whether an applicant chooses to disclose their special needs. At university, my assistant told me how another client, a highly talented I.T student who was a wheelchair user, applied to dozens of jobs within his field – disclosing his additional needs and had little response. When the student experimented with not disclosing, he was offered a job. Hirst says: “Attitudes play a role here – there is a lack of recognition that there is talent and capability, but barriers prevent disabled people from getting into careers and progressing. Lack of access and negative attitudes exclude us. It is assumed we will be less productive or too expensive to accommodate.”
Many workers with additional needs opt for self-employment as a means of taking charge of their economic autonomy or will to use their skills and productivity. This can be liberating but is much less supported than landing in conventional work. There also is little or no initiative by government bodies to encourage or educate employers to hire someone with a disclosed additional challenge.
There is often a real reluctance to not want to complain or ‘rock the boat’ whether someone has experienced blatant job discrimination or just standing up for oneself in daily circulation. I once had an exchange with a woman in a wheelchair who also had a visual impairment. She spoke of how people often tried to just drive or push her specially adapted chair and I asked her what she did to defend her personal space and independence – her response was, ‘I have a duty to be polite.’ Well, standing up for yourself, doesn’t mean being aggressive, yet the feminist and racial equality movements didn’t gain traction by tapping their oppressors on the shoulder and politely whispering, ‘please stop’… Women or people of colour often took their campaigns straight to politicians, led strikes or rallies, wrote, sang or sketched images of their plight within literature and art, but again, there is precious little evidence of this within the movement for people with disabilities. People with additional challenges might find fighting in the same way as feminists or people of colour have, much harder, but in my wealth of experience more-often-than-not – people don’t want to step out of their comfort bubble. This isn’t to say, people aren’t constantly battling for equality – either for themselves, their children or relatives with additional needs. The wheelchair user who has to suss out an alternative entrance to a venue; a person who is deaf campaigning for clear masks, so they can lip read and Dr Amy Kavanagh’s campaign #JustAskDon’tGrab are fine examples of pro-activism in trying to change attitudes. These examples amount to a kind of continuum of steady rumbling under the surface, not always acknowledged unless given social or mainstream media attention.
Catt asks: “why does Disability have such a low profile? Why is Disability still attached to able vs disable, capable vs incapable? The simple truth is Disability is still a term seen as something negative… The idea accepted by so many People with Disabilities, such as vulnerability.” Hence, the poor cousin to gender or race relations, as my advisor at university used to say.
There is a long-running history in the UK, of charitable organisations representing anything from people with sight impairments, deafness, autism, people with brain injuries to Charles Bonett Syndrome – you name it, they’re out there. Yet in my wealth of both personal and networking experience, it widely varies which organisations promote self-advocacy vs a top/down approach. Many of the organisations which started out small, have become national and professionalised, to the point they’re out-of-touch with clientele. Hirst says: “There are too many organisations ‘for’ disabled people that are led by non-disabled people. The approach to disability is then often a patronising one, especially where fundraising relies on making people feel sorry for us.” She emphasises how organisations often become ‘go to’ places of expertise, yet the people they are meant to benefit don’t have a say or influence in decision making. She stresses how user-led organisations, such as those for learning difficulties, led by them, are more likely to encourage self-advocacy or skill-building. No one from an organisation was available for comments.
The Media and Language
As with most things, the media strongly influences societal attitudes to ‘difference’ or additional needs. There seems to be an either or, weak and needy versus the great and good over-achiever model, as with the Paralympics. Hirst explains, holding people with disabilities up as charity cases to pity or lesser lives, contrasts against the supercrip Paralympian who has ‘overcome disability’. Catt told of how, as a member of the British Sub-Aqua club, he gained the position of diving leader – responsible for saving lives. Another club member, a journalist for a local paper, wanted to write of Catt’s achievements. However, when the headline was going to be, ‘blind Chris Does it Again’ he turned down the publicity, as he stresses he is Chris first.
As a journalist, I’m acutely aware of the impact of language and its connotations. I’m forever bewildered at how people with additional needs haven’t progressed in identity language in the same way ‘people’ of colour have. It the risk of sounding pedantic, in general a man who is gay doesn’t walk into a room and say, ‘hi I’m gay, let’s talk – with the odd exception of the joker at a comedy club… I wouldn’t expect to pick up the phone and someone begins the conversation, ‘I’m black, so can we arrange something? Although the homosexual male and person of colour are both proud of their identities and diversity within their communities, those characteristics are not first-among-equals in defining them. Yet a wide range of people with additional needs, believe if you don’t thrust ‘disabled’ before them as a person, you’re ablest. At the risk of sarcasm, I often want to ask someone who introduces them self as ‘dis-abled, what their name is. By contrast, there are those of us who, don’t deny having impaired vision or hearing, as it’s a part of us, how we navigate the world or communicate, but I’m a woman first, a mum, a journalist and happen to be visually impaired. So, what is ablism? – discrimination in favour of ‘able-bodied people? This isn’t an opinion piece, but I’m personally offended being identified based on what I ‘can/cannot do – I and others, are different but capable. Yet, many prefer this type of polarisation within the social model which reflects how society portrays them. Catt says: “Nobody is wrong, it’s a difference of opinion.” As Natasha Hirst like many others prefers the social model.
These snapshots of us getting such a lack of recognition, are not to say things haven’t progressed . True inclusion involves practical steps and can be complex, yet the diversity discourse has a lot to learn in furthering its agenda. There’s more to inclusion than access to buildings – get us on the board of directors. I could write volumes on the ways people with impairments are robbed of agency – making it difficult to shine, but people themselves have a responsibility to demand better. We work harder to study, gain employment and in daily life and it’s exhausting. Employment tribunals or facing unpredictable attitudes while out-on-the-beat is damning, but in this atmosphere of xenophobia we all have a role to play in raising our voices above the noise. We’re not being overtly choked to death in public or targeted based on suspicion, as people of colour often are, but we face our own unspoken glass ceiling within career advancement and are often choked with overly zealous approaches to the tune of ‘best interest’. We’ve come miles from Victorian times, legislation and technology have opened doors and enhanced our quality of life. Chris Catt says: “If you want something, you have to go out and get it. You cannot say I can’t because I’m Disabled.” Unless people stress they are strong and capable, equal but different, barriers will remain fixed and bridges won’t be built.