Being a researcher
I’m fortunate that I’m a researcher. It makes me question, and challenge, my knowledge. Research starts with you not understanding what people need or want, then going to find out. In the research world, not knowing at the start of a project is a good thing. In contrast for many, the world of work is about always being seen to know things and being confident and vocal in your knowledge. Sometimes with access and inclusion we need to say, “we don’t know.” Assuming that you know what people need or want is patronising, damaging and leads to exclusion.
Question what you know
Question what you know or what you think you know. When and how did you learn about access and disability and how to treat a d/Deaf or disabled person? Who did you learn from? If your experience is based on one friend or family member that will be limiting, it’s only one person. You can’t generalise the needs of many diverse individuals from the needs of one.
Attitudes and language around diversity, disability and access have changed over the past 30 years. If you haven’t updated your knowledge around disability and access in the last 10-15 years, the chances are you need a refresh.
Rights not sympathy
You might have done training around access, but principles and theories have changed. If your education didn’t include the social model of disability [1] then that’s a good place to start. The social model developed by disabled people focuses on what people can do rather than what they can’t do. The social model looks to give people the right to have their needs met, rather than sympathy. Historically the medical model of disability was about caring for people rather than integration. A lot of the access barriers d/Deaf and disabled people face are around attitude, with people assuming they can’t do things. If you really want to know what someone wants and needs - ask them.
Who is the expert?
People who are d/Deaf or disabled often get talked over. People think they know what is best for them, or they consult ‘experts.’ The expert on someone’s needs and wants is likely to be that person. Yes, some people might need help having a conversation but ultimately people are the experts on themselves. That is why within the disability community there is the concept of ‘organisations of’ such as Disability rights UK.[2] Disability rights UK is led by and run by disabled people. This differs from ‘organisations for’ which support disabled people but may have few disabled people in key positions of leadership and on the staff.
Everyone is different
As Dr Stephen Shore [3] said “When you meet one person with Autism, you’ve met one person with Autism”. People are individuals and this applies to everyone with a disability or an access need. Yes, there are some things that will nearly always support most people with a particular access need. But there are also personal aspects to do with personality, education and socialisation which may be different.
Times have changed
Time is a great leveller, things are better now for d/Deaf and disabled people than they were 20, 30 or 50 years ago. But changes take a long time to filter through. The impact of discrimination, prejudice and even human rights abuse, such as depriving people of a language can take a long time to be even partially addressed.
It wasn’t until 2010 that the International Congress on the Education of the Deaf (ICED) apologised for banning sign language in Deaf education in 1880. [4] This 1880 resolution effectively denied many d/Deaf children an education. If they were taught in British Sign Language (BSL), and through sign language learned English, this could have led to greater equality and inclusion. In the last 20 or 30 years deaf educators were still denying d/Deaf children the right to learn sign language and parents were being told that BSL was sub-standard or even not a language. Linguistic research has shown that sign languages are languages. Language deprivation [5] and poor education of D/deaf children causes repercussions over generations.
Time for a refresh?
If you think you might be a bit out of date. Perhaps your experience is based on one or two people, your framework for understanding is over 15 years old, then what next? Start asking those questions:
- How should I communicate?
- How can I help?
- What do I need to put in place?
There are some things that are really fundamental like having wheelchair access, not moving your lips really slowly and exaggerating lip patterns when speaking to a deaf person. Try and get to grips with those basics. When you travel to a different country, you ask yourself “what’s the culture? what are the rules?”
Simply asking. ‘Is there anything I can do to help?’ Shows acceptance and inclusion.
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References
- The social model of disability, Scope video
- Disability rights UK, 'Organisation of' disabled people
- Dr Stephen Shore Autistic professor of special education at Adelphi University
- International Congress on the Education of the Deaf (ICED) banning sign language in 1880 and apology in 2010
- Language Deprivation and Deaf Mental Health, Dr Sanjay Gulati