For those looking to learn more about disability - including how talk about, how it impacts people's lives, the history of it (including the UK more recent years), a great intro book is "Disability the basics" by Tom Shakespeare.
There is a lot of very useful information, I usually like to share the data, I find numbers (usually) don't lie.
Here are some bits-and-bobs from the book
The 2016 estimated population of the UK in 2016 was 64.1 million from those:
- 19 million are people with long-term illness
- 11 million are people affected by common mental disorders
- 11 million people affected by pain
- 10 million people with disability
- 9 million people with hearing loss
- 6 million unpaid carers
- 2 million people with sight loss
- 1.28 million people with learning difficulties
- 5% of children, 10% of working age and 50% of older people have a form of disability
The main barriers people with disabilities face:
- inaccessible public transport
- inaccessible public buildings
- signage, comms and information in inaccessible formats
- negative attitudes
- low expectations
- prejudices cultural representation
- discrimination in healthcare
- discrimination in employments
- violence and abuse
As you can imagine disability through-out history hasn't been sunshine and butterflies. The book gives the example of Sparta "the Greek philosopher Aristotle wrote - As to the exposure of children, let there be a law that no deformed children shall live." That might be shocking, but that is sadly still a practice in many places across the world where children with disability are abandoned at birth, or even worse killed. The book also talks of different views, Egypt being a land where "where all children are reared" and even the Gods where depicted with disabilities. It's not just in ancient Egypt these depictions existed. "Moses was said to have had a speech impediment". "Odin sacrificed one of his eyes to gain knowledge, his son Hoor was born blind". Representation and correct depiction are very important elements to understand, and normalize what many still fear today.
The book also mentions a generalization that is largely true referring to people born with disability and people who acquire it later in life:
- "People disabled from birth are likely to feel that disability is part of their identity. They cannot imagine life without it. They do not have a struggle to come to terms. However, they might have to struggle to access education, employment..."
- "Those who acquire disability later in life are in some ways advantaged. They may have already received a good education(...)But acquiring an illness or impairment through trauma or disease usually comes with a major shock. They thought of disable people as other(...) They can no longer do all the things they took for granted."
People with disability suffer from a greater degree of violence and abuse. The team working with the author did a research with people with restricted growth in north of England with the following results:
- 96% of respondents had experienced starting or pointing
- 77% had been on the receiving end of verbal abuse
- 75% felt they often attract unwanted attention
- 63% often felt unsafe when out
- 33% had been physically touched by people in public
- 12% experienced physical violence.
If you find those figures shocking, it's because they are. But sadly that is the day-to-day reality for a lot of people with disability. I also feel we all have a personal responsibility to change this narrative. Here are the things that worked for me:
- Educate yourself and educate others around you. Books that made on impact on me are "Being Heumann" or "Haben". Likewise, a movie is Crip Camp. I follow advocates and people with disability on Twitter, they are a great source of education as they often share their experience.
- If you have the time, volunteer at a NGO that works with people with disability.
- Be an ally. Even if you don't have a disability yourself, if you can still advocate for those who are. Disability will impact ALL of our lives, either directly or somebody who we know.
- For things that are within your power, design with accessibility in mind. Are you making a product or service? How can you design it to make it more accessible for people with disability? Eg. is your website accessible to a deaf or blind user? How about one with dyslexia?