Scope, the UK organisation for people with cerebral palsy, defines disablism as ” discriminatory, abusive or oppressive behaviour arising from the fact that disabled people are thought inferior to others.”
Words like sexism and racism are in the dictionary, but why isn’t the word disablism? Today, I looked on scope ‘s blog, and saw that the challenge they set is to write a letter to a dictionary editor arguing the case that the word disablism to be included in the dictionary. Here’s my letter:
Dear Oxford English dictionary editor:
I would like to let you know you that today is Blogging Against Disablism day. This may, or may not, be of personal interest to you, or may influence you indirectly or directly. Obviously, I don’t know you, so I don’t know whether it does or not
I would like to introduce myself. I am a person who was born with cerebral palsy and hydrocephalus. Many people have heard of cerebral palsy, but not hydrocephalus. Cerebral palsy is a disability in which lack of oxygen to the developing brain before during or after birth can cause brain damage and disability. In my case, I have spastic quadriplegia cerebral palsy, which means that the muscles of my arms and legs are affected by more stiffness than someone without cerebral palsy has. I use an electric wheelchair to move around indoors and outside. My hydrocephalus means that my brain can’t regulate cerebral spinal fluid , and produces too much of it. The CSF is supposed to protect the brain and spinal cord. I have a drainage device called a shunt inside my brain to drain the extra fluid off.
Technical details of my disabilities aside, I’d like to now go on to explain how disablism has affected me throughout my life and does still to this day . I am now 33 years old, and in my lifetime so far, I have experienced a lot of examples of disablism. For me, disablism first affected me when I neared the age at which I would begin school. I was born when my mum was 27 and my dad was 30 years old, and I was their first child.I was born the second of a set of identical twins, and unfortunately my twin passed away shortly after our birth. From talking to my mum over the years, she and my dad sought a lot of advice from people about whether it would be better for me to attend a special education school or be in a mainstream school with extra help. the first school I went to a school called Chailey Heritage in Sussex , a school for children with severe and complex disabilities. I was very shy and insecure and unsure of myself. When we moved house, my parents wanted me to attend a local primary school not too far from our then family home in Wallingford, Oxfordshire. The headmistress at that school thought that I would be unable to learn, and did not want me at her school because at the time due to my disability, I was still struggling with being toilet trained, and needed toileting assistance. When I started school, I, like any other child, was very nervous, but as my parents fought for me, and because of my ability to learn, I was able to attend school.
I had a full-time personal assistant, and the same when I went to junior school. From infant school age, I was marginalised from my classmates because of my disability. Back in the early 1980s, it was not common for children with disabilities to attend mainstream school, and I was the only person with physical disabilities at my school. This made me a target for my classmates, and I was automatically seen as inferior and “different” to them because I had to have an assistant with me all the time. Even at the age of five or six years old, children did not want to sit next to me in class, or talk to me, and thought that my disabilities were “contagious. ” This changed slightly when I got to secondary school, as I got to know other students with disabilities, as my classmates were more mature. The problems didn’t and there though, because when I was studying at secondary school in the same class as my disabled classmates, I felt grouped together with them on the basis that we were all disabled. I did end up making friends with some of them though , and this increased my confidence in myself and helped me combat my shyness further.
Throughout my educational career, arguments from the schools or university for not providing me with the amount of assistance that I needed were usually down to “lack of funds. “Despite my own and my parents’ fighting, I always felt that I didn’t have enough assistance when I needed it, and I felt, especially at secondary school, that I was treated like I was a nuisance to the teachers because I liked to ask a lot of questions in class. Outside of school, I didn’t have very many friends, and was not invited around to their houses much. I found that my sister, who does not have disabilities, was asked to socialise by our friends after school a lot more than I was, and that by many of them I was known as “Nicky’s sister” or “the girl with disabilities, ” and not by my name, Katherine.
I was so shy, and this made things worse for me, and I would isolate myself even more staying indoors and not getting to know people because I thought that they would say things about me or my disability. I had my fair share to have insults, the usual ones “spastic, four eyes ,” and more than my fair share of the use of the “R” word, which is a word that I can’t stand. I was referred to as being “slow to learn, ” “incapable/unable to learn or understand things, and even ” lazy.” Everybody thought me clumsy, and too introverted to be good fun. It was not just during my school career that I encountered disablism. I experienced it when I tried to find work too. I am well qualified because I have a university degree, and I did a CELTA course to teach English to others from different countries. When I went for job interviews, some employers would tell me straight out that I wasn’t who they were looking for, and others would ask me to my face what was “wrong” with me. I got told that I was a liability to the company because of needing special equipment and adaptations in my place of work.
Given all of this, I think that the word disablism should really be in the dictionary because it is an attitude, a stark reality is that many people with different disabilities and health conditions face, and people need to be made aware of it. We are led to believe that the world is quite accepting of people with disabilities nowadays, but I don’t think that’s true. I think there’s still a long way to go. Although things like access to an area are very important, it’s not good enough to just put a ramp down for a wheelchair user and say that the world is more disabled friendly, because the change has to do with attitude and if we don’t change our attitude then disablism will always happen. There are too many people worldwide who go through what I went through and are still going through it, like I am every time I find I can’t get somewhere because of lack of access , or someone uses a derogatory term.
Looking back now, I can see that the people were all wrong to treat me as they did and that very few people actually saw me for who I am, and recognised my abilities, and good qualities as a person rather than just seeing my disabilities. It is all too easy for people to focus on the fact that somebody uses an aid in their daily life or has glasses, or a hearing aid or wheelchair, and make judgements. People need to be less judgemental. I know, though, that this is easier said than done. I think including the word in the dictionary will make people more aware that disablism is real and it exists. Awareness is power, and people need to be made more aware. It is not good enough that discrimination like this has to keep happening. Disability and disabled person are words, so why shouldn’t disablism be shown in a dictionary, and used to describe what it is, a lack of understanding of disability and people of disabilities. Disablism points to ignorance, unkind people.
Don’t we want to educate people so the world is a kinder, more accepting place? I think, and hope, that if people are aware of disablism and how it affects those of us with disabilities, our lives will be better and we’ll be able to live in better harmony with others, To me, disablism is just another form of segregation of society that harks back to when people with disabilities were institutionalised.The fact disablism is even happening nowadays shows how far from a “truly inclusive” society we really are, and the saying “everyone’s equal” turns out not to be true in this case. Isn’t a better educated, more informed, society better than an uninformed, ignorant one?
People with disabilities want the same things as those without disabilities, love, understanding, and to be included. We don’t want pity and marginalisation,which is what disablism leads to. Everyone is unique and has something to give to society, and shouldn’t be pushed out or ignored or denied opportunities just because of how they look or what they can or can’t do.
Terminology used to refer to people with disabilities is constantly evolving, like language itself, and just because those of us are a minority in society as a percentage of the total population of a country, doesn’t mean we should always be referred to as though we are less. It’s true, we all have our limitations as human beings, whether we have a disability or not, but I’m all for respect in society, and that’s why I spread awareness of my life with my disabilities through my blog and am very accepting of people, as I hope they’ll be towards me.