The entire concept of disability, and the reality of life as a disabled person, is not well understood by most nondisabled people.
In solidarity with most actual disabled people, Umbrella Lane subscribes to the social model of disability. Unlike the medical model, which describes disability in terms of deficit - all the ways disabled people are not “normal” - this posits that what actually disables disabled people is not our individual impairments, illnesses or differences, but the lack of equal access we have in society and the discrimination we face.
A useful way to realise the difference between impairments and disability is to consider visual impairments that can be mitigated with glasses. Imagine a hypothetical person called Susan. She is so short-sighted she cannot read without glasses unless the page is right in front of her face. Because Susan lives in modern Scotland, her eyesight was tested in early childhood and she has worn glasses since. With these she can use a computer, drive, and live independently. Her sight does not affect the jobs she can do or her living situation, and she rarely even thinks about it. Susan is not disabled.
But imagine Susan lived 500 years ago. One pair of 16th-century spectacles represented weeks of work by skilled craftsmen and cost years of income for most ordinary families. So this Susan’s visual impairment would have a huge impact on her life. To learn any of the textile crafts that were the biggest paid occupation for women, she would need to teach herself by touch. She would find it near-impossible to identify plants, so it would be incredibly difficult for her to work in the fields or the family vegetable garden. She might need a guide to travel anywhere outside the home. So for gathering water and firewood, baking, brewing - Susan’s visual impairment would impact almost every part of her life.
Susan’s family might also have a different attitude towards her than her siblings. They might decide she couldn’t contribute to the family, or that she “shames” them, and they might expel her, whether into an institution or onto the road to beg. Or they might kill her. This has happened to disabled people throughout history, across the social and financial scale, and still happens in the modern-day. Conversely, they might infantilise her and prevent her from trying anything that might hurt her, so she might never learn to care for herself, do independent tasks, work, or have adult relationships.
Without any change in her actual physical capacities at all, while modern Susan is not disabled, sixteenth-century Susan is. What actually makes her a disabled person isn’t actually her impairment, but how that interacts with the aids she can access, the tasks of her daily life, and how social attitudes affect what she is allowed to do.
(The Disability flag, Overcoming flag or Flag of the Rights of Persons with Disabilities is a flag that represents people who have a disability. It was created by the Valencian dancer Eros Recio in 2017.)
Because disability is a social phenomenon, how people understand it and the ways it interacts with other social phenomena - from misogyny and racism to educational philosophies and how people use technology, and how this actually affects disabled individuals, are all very complex.
Many cases are actually very simple and blatant. Wheelchair users cannot climb steps in our chairs, so we depend on ramps and lifts to be able to access buildings and the activities that take place in them. Those are thin on the ground - in Glasgow City Centre, for example, almost every building is accessed by at least one step. Many have no lifts, or lifts up flights of stairs that are too narrow for wheelchairs. That is an entire world of offices, bars, services and shops - vital parts of most people’s lives - that very few wheelchair users can access. With so many workplaces we cannot physically get into, it is difficult for wheelchair users to hold jobs. Very few workplaces will make expensive adjustments to their building for one ordinary worker - most of us are not Stephen Hawking! This does not mean the physical environment was made this way deliberately to exclude wheelchair users - usually the people designing, building and using them just never considered us. But the effect is still that disabled people are excluded from huge parts of life most non-disabled people take for granted.
In other cases, the barriers are due to attitudes rather than the physical environment. Most disabled people can tell of job interviews when the interviewer’s face crumpled at the sight of a mobility or hearing aid and they knew that no matter how good their interview was, there would be no job offer. Or a recruitment process going incredibly well until they disclosed an invisible condition. This is particularly true of serious mental illnesses such as schizophrenia and bipolar disorder, which carry an enormous burden of stigma and misinformation even when very well-managed by medication. Even in companies that say they care about staff’s mental health, employee assistance services often refuse to help employees with such conditions manage even common issues like workplace stress.
In many ways, social attitudes are the biggest issue disabled people face. There is a very strong belief amongst many nondisabled people that disabled people receive a lot of government aid without proof or problems, and consequently that many disabled people are “faking” because we “don’t want to work”. There is little public knowledge about how stigma affects disabled people’s ability to get and keep jobs and how few legal protections we have.
There is also a widespread belief that many impairments and health conditions don’t seriously impact the actual lives of disabled people and any impact can be “overcome” by “trying harder” or a “positive mental attitude”; to the extent that it is considered “our fault” if we cannot. Media portrayals of disabled people are often stereotyped and completely unrealistic, and seeing real disabled people who do not fit the stereotypes can play into such beliefs. This is worsened not only by so few jobs for disabled people in creative mediums, so people are rarely writing or acting from personal experience, but from so many “disability narratives” actually coming from family members, carers and organisations. Those people do not see disabled lives firsthand, and the stories they choose to tell often have a different purpose than conveying our authentic experiences.
There is also a lot of stigma that can cause disabled people to feel ashamed of and conceal the reality of their lives. Displaying symptoms that would excite sympathy for an acute illness or injury can be considered “attention-seeking” when someone needs to ask others to consider them constantly, as can using a mobility aid or wearing supportive accessories.
It is so common for family members or carers to be considered greater authorities on a particular condition than the actual disabled person that it hugely impacts how society as a whole views disabled people. We are often infantilised or considered unreliable witnesses, even when talking about our own lives. Many disabled people will experience strangers talking about us to a companion rather than addressing us directly, and it is difficult to escape the “autism parent” phenomenon, where the non-autistic parents of autistic children attack autistic adults for speaking out about their lives.
The parallels between how disabled people and Sex Workers are treated are sadly clear. Both groups are often dehumanised with an attitude combining elements of pity and disgust. We are frequently blamed for the stigma we experience, to the extent that both groups can be in danger of verbal abuse or even physical attack in some spaces if identified. We are frequently talked about in public discourse - often with a lot of other agendas, misinformation and stereotyping being involved - while our own voices are silenced.
There is more crossover between the two groups than people may think. There are many ways in which sex work can work well for many disabled people. It is usually freelance, offering Sex Workers the flexibility to set their own working conditions and schedules, including working around flare-ups, and is paid well enough to live on from relatively few hours of work. Phone sex and cam work can be entirely remote, while selling sex and desire can be attractive to people who have been infantilised and desexualised.
If you are nondisabled, this month is an excellent time to educate yourself on the realities of disabled lives from actual disabled people. Amplify disabled voices, and not only credit but compensate disabled people fairly for their work. Share and donate to organisations led by disabled people. Covid has seen a wave of eugenicist discourse, with disabled people’s safety and lives being frequently considered reasonable sacrifices to“return to normal”. This is a great time to speak out against this.
For disabled people ourselves, our celebration may be a little different. Although many of us will continue the activism and advocacy we do all year, we can still find ourselves internalising the marginalisation and judgements we are subject to. So the most profound celebration of this month might be risking judgement even from those close to us to be open about the realities of our lives. It might be fighting our GP to access pain medication that lets us function, or cycling through antipsychotic medications trying to find one that controls our symptoms without destroying our libido. Or using a mobility aid to go for a walk without being unable to stand tomorrow, or even letting ourselves stay in bed on a bad pain day without feeling “lazy”.
Sometimes the most radical acts of celebration are simply letting ourselves exist as who we actually are.
Thank you to our own Red Hamilton Russell, a consultant of Umbrella Lane who wrote this wonderful piece.