I am at a strange juncture in which many separate and distinct areas of my life are coming together. They are naturally overlapping and resonating with one unified chord. It is a harmonious and yet, at the same time, dissonant chord that echoes with community, diversity and inclusion and while these thoughts are, by no means cohesive as of yet, I felt that this might be a good space to begin to write them out and let them take shape.
I suppose these thoughts really started to gain momentum on our drive back to Alberta after visiting BC for a month and a half, I stopped at a Chapters because I ran out of books to read and in my world, this is a bit of a crisis. I had heard about Jean Vanier’s book Becoming Human but to be honest, right now, I can’t tell you when or where I heard about it. As I started to read, I became captivated by Vanier’s words. So much of what he wrote were thoughts that I had not yet been able to articulate but had pondered abstractly for years.
For those of you who aren’t familiar with Jean Vanier, he is a Catholic theologian and philosopher who started a community called L’Arche. At its inception, L’Arche was simple – it was a community, founded in France, which brought together people with intellectual disabilities as well as neuro-typical individuals to live together. There are now 147 L’Arche communities in 35 countries.
In September, I also began a directed study (which is part of my Master’s Degree) on the rhetoric of dis/abilities in the 17th and 18th centuries. It has involved reading the works of Shakespeare, John Milton, Margaret Cavendish, John Locke and others in light of dis/ability studies. This, in and of itself has been intriguing, but further to this I had a conversation with my new supervisor. You see, when I started my Master’s degree a number of years ago, I had a different supervisor (this is what happens when it takes you too long to finish a degree) and at one point in the conversation, I asked, “Now correct me if I’m wrong but don’t you have a child with a disability?”
“Well, I don’t like to use that language, but I do have a son with Down syndrome.” Boom! I was totally called out. I am never comfortable with that language either and yet, it is the common currency – the language that everyone understands, so I use it. As I have been studying the rhetoric behind dis/abilities however, it has become glaringly obvious that just because a certain word was used to describe an individual who did not fit “norm” at one point in history, it doesn’t mean it can’t change. In fact, did you know that “normal” was not even a thing until about 1840.
Let’s put this into perspective – my Chinese ancestors were already in Canada. So really, not that long ago. In his book, Enforcing Normalcy, Lennard Davis describes how normal was not related to the “ideal”, as we often assume. The ideal rather, was reserved for the gods as portrayed in a Venus statue, for example. In this case, all members of the population are below the ideal. No, “normal” was only birthed out of Statistics. The people that defined “normal” were all connected with industry. Who was the ideal worker? It was based on averages and thus, followed social implications. There was then concern for national fit-ness and intellect. If the citizens are not fit or have undesirable traits they will bring down the nation’s fit-ness – hence, eugenics, (a topic I will reserve for another time). The point is, from this new understanding of “normal” came new words to describe deviance and thus, we had the invention of “disability”. Note: disability is a social construct not a biological attribute. That being said, with the 18th century we also had scientific discovery and the naming and categorizing of different impairments and with that the thought that perhaps, humanity could be perfected. This language in and of itself, implies disability is in contrast to perfection BUT if you really consider eliminating diversity, all you would be left with is “sameness”.
It is my desire, however that society begins to better understand that sameness would only deplete morale, ethics and would lead to the deterioration of society. Look at books like The Giver or movies like Gattaca. We know this people! If you eliminate all the Jews, or all the Muslims or religious expression altogether, your world is not going to be better. If you eliminate all the deaf people, or all the lame people, your world is not going to be better! And yet, our language denotes connotations that historical difference is something to be feared and eliminated. Words like “disability” or “special needs” – these words do not foster a sense of inclusion, and yet, this is the language of our governments, our educational policies and even our advocacy organizations.
Whenever, I delve into academia, I try to keep one foot on dry ground at all times and ask myself, “what practical implications does this have.” I don’t want to study just for the sake of theory. There needs to be a practical outcome and this is one of them. Our language needs to change. Until our language changes, attitudes will not change.
So what type of language should we use? The answer is language that promotes the truth that each person is an integral part of our community. In our quest to perfect humanity, we have pushed a lot of people to the margins. Over the course of history this has included, but is not limited to, people of different religious affiliations, people from different cultures and people with historical difference (my more appropriate phrase in an attempt to replace “disability” at the moment). This has also included however, the young and the old. Society views weakness as an undesirable trait and both the young and old experience this weakness. As Jean Vanier writes however, “To deny weakness as a part of life is to deny death…If we deny weakness and the reality of death, if we want to be powerful and strong always, we deny a part of our being, we live in an illusion. To be human is to accept who we are, this mixture of strength and weakness. To be human is to accept and love others just as they are.” (Pg. 40)
To deny weakness as a part of life is to deny death
Recently, here in Canada, there has been a huge emphasis on the treatment of indigenous peoples. In terms of rhetoric, the label we have placed on these people has change four times in my lifetime (Indian to First Nations to Aboriginals to Indigenous). Canada’s indigenous people were pushed to the margins. They were mistreated, forced to live in residential schools and abused. As I am listening to this conversation however, it is sounding all too similar to the history of people of historical difference. Mistreated. Forced to live in institutions. Abused. In fact, this treatment still exists in many parts of the world. As we work towards reconciliation however, for indigenous people (I still trip on this rhetoric, unsure as to what is politically correct), we look to all that they have done for our nation, we acknowledge their contributions and seek to improve the lives of those who continue to live in the margins – on reserves without clean water, without schools or proper infrastructure.
We need to do the same for people of historical difference. We have pushed these people to the margins and yet, we need to instead, recognize their contributions and seek reconciliation. Vanier challenges us to recognize our common humanity and embrace a love that transforms loneliness into belonging. Belonging, is such an important concept in and of itself that it also deserves and entirely separate post, especially as it relates to individuals with exceptional social needs (note: exceptional, not special and not disability). Of belonging, Vanier says, “Belonging, then, is a school of love where we learn to open up to others and to the world around us, where each person, creature, and thing in our world is important and is respected.” (Pg. 41) These words were especially poignant as I considered inclusion and Ella’s school situation. He goes on to say, “Belonging…is the place where we can find a certain emotional security. It is the place where we learn a lot about ourselves, our fears, our blockages, and our violence, as well as our capacity to give life; it is the place where we grow to appreciate others, to live with them, to share and work together, discovering each one’s gifts and weaknesses.” Gifts and needs.
We are all part of a community: be it school, church, a club, our neighborhood or our workplace. Our diversity, meaning our strengths and our weaknesses, brings beauty to those communities. It eliminates sameness and suppresses animosity and while acknowledging individuality forces us to embrace our interconnectedness. As we strive to reclaim community (the community we have lost and has been replaced by isolation and loneliness) I encourage you to consider: what is one gift you bring to your community and what is one need? Because I believe that if we can first see ourselves as imperfect humans with needs it will be easier to accept those around us as part of our collective humanity and perhaps, just maybe, if we work together, and be generous with our gifts, no one will be in need.
Belonging, then, is a school of love where we learn to open up to others and to the world around us, where each person, creature, and thing in our world is important and is respected.
3 Comments
I’ve read that book:) this is why there is the Neurodiversity movement to which I urge you to read about and this all ties under the heading of the social model of disability which states that disability is caused by how society is organized. Also that disability rights are often fought or spoken from those who don’t have them which is a step in the right direction but I order to change the conversation ( while the words matter) what matters more is how we approach the subject and who speaks. We need people to speak who actually have the conditions or differences ( I usually refer to differently wired which I prefer for myself) and allow the medical community to also defer their knowledge to those who are going through it themselves. I’ve been studying this for years and in each difference there are different preferences – for instance I refer to myself as autistic and most autistics do the same yet often we get corrected by uneducated parents who think they are schooled in “proper rhetoric” to use first person language yet for most of us we prefer and have reclaimed our descriptors and most of us will wish to use that and for those that do not and prefer first person that is fine too;) the insistence on ” proper language” can also damage tho it has its merits for sure in changes my conversation but the heart of the matter means more. Ironically I have been treated the worst in my condition by some well meaning social justice warriors and with little compassion but insistence on their ” educated stance” which is why I push for inclusion being given by pushing for actual voices of the neurodiverse to be used. Also , I have been expected to conform the most in churches and religious settings – my experience has been discounted as “bitter” simply by speaking out on how those of us with different needs are treated and personal experiences which ARE different . Or ” dramatic” when I’m speaking upon legitimate sensory overload. People who say they are all for different rights, against ableism and fight for advocacy have also treated me and more I know, on a human level with disregard and disrespect- so for myself, as being considered deviant even from family expectations ( with little understanding to core differences that cause this) and my children I feel that what needs to change amongst also words used, is more education from resources written by the differently abled and not limited to one segment we are interested in either. For instance I don’t simply just read on resources written by autistics but those written by people with Bipolar, OCD, ADD, impaired, chronic conditions, Down syndrome ect cuz they all teach an aspect of nuerodviersiry and also have overlapping traits or issues and then key and important differences. Tho I admit it’s hard to find some literature at times it is still possible – there are so many ways of communication and behaviour IS communication of we only listen
Sorry I always forget to add the social nicities in till after abd this time I published before I edited so I should add that it’s an awesome dedication to wish to make the world a better place and to be educated too from all sources even if they are written with a certain slant or perspective. In sociology studies this is always remembered within each cultural thought process. So that said, I like that your passionate about changing the way we are treated or thought of because there is a lot of judgement – even well meaning – from those who think they are being respectful and kind. What I think changes society most are stories and single relationships learning about each other cuz once one knows who someone is – truly in vulnerable and good circumstances – it’s hard to think so harshly about them. And stories through the ages from those who travel them are crucial- listening and telling – even if it seems crazy to someone else ( for instance sensory issues) it’s important to listen – it’s like the matrix for most who are deviant in our current culture and it’s fine not to have full understanding – but a little bit with those who claim to love us is HUGE. I’m lucky to have that. I had to fight for it… I lost people and gained people I adore ( a small loyal group ) and it will morph again but the journey together is what counts. I used words at the beg I no longer use but I don’t judge those at the beg of their journey who use them or who don’t get it . I don’t expect my way to be the new way as that would be wrong too – what my goal is to live parallel culturally – not against it but not fully in it – but running alongside on my individual path with a few respectful or even disruptive merges at some point.. and I wish for others to respect that while I still respect the essence of their selves. It’s different in each individual contex with some overlapping ethics that transform to each situation differently. … where was I going with this? Oh yes I was trying to validate your post and applaud your own personal steps – ha ha don’t know if that came across 🙂 good luck in your future studies ! Please read some literature from the neurodiverse community – blogs, books – I have many recommendations if you ever need them 🙂 this is why many people don’t even know rosemary kennedys tragic and enraging tale – history and education is made by the winners, the ” professionals ” and those who wish to keep secrets… it needs to be from the vulnerably different. Rosemary was special and amazing and she was silenced. Yet even in silence she made the world better in what was considered an almost vegetative state due to her forced lobotomy. She was a bright deviant spirit at the mercy of those considered the ” norm ” and the powerful respected made decisions based on their perspective … it makes us really consider our day to day interactions and decisions eh?:)
Oh can you erase the middle comment? It double posted before I was done editing it ( not supposed to have a smiley face there…)
Oh and you may enjoy the movie “Gifted” while I also take issues with it – it shows the other side of ableism too- seeing a child with extraordinary abilities and what we do with that. Our society values “potential” and “achievements” and it is what school is misplaced for…and the film shows how that can destroy multiple lives…and that children need to be children. Magical, fun, engaged in play even if they are intellectually superior in one way, they are still childlike or even sometimes in a different level for emotional or in other areas…and that while we need to feed their desire to learn or grow, we do not need them to be little braniacs even if they can or for them to “be amazing” by being famous or doing something big even though they are capable of it…that is our culture’s definition of success…but instead to feed their curiosity in age appropriate amounts but then encourage being a child and fostering love and happiness and general life contentedness…that will make a huge change in our world instead of producing more factory workers cookie cut for similar things with similar ages and social conditioning in the name of social community. if we are re defining terms- then our deeper roots like our educational system need to be seriously re considered…our arts and achievement, our sports and competition…there are healthy ways to foster this but the entire construct needs to be addressed. We need to re think our terms and what they mean, even if they have merit ( like the school system DOES in fact) but merit doesn’t mean good or what could be best. It’s another form of ableism going the other way… sorry tangent. This is a HUGELY passionate area of my life ( ableism/ nuerodiversity/ educational and medical system) and I generally try not to speak on it unless one on one in important situations but sometimes I get ahead of myself because it not only affects and has affected my life deeply, but my children and also most of the people I know and love are Nuerodiverse… you are right- the conversations need to change…including the hard sensitive topics like school, secondary education, birthing, the medical system…it all organically ties in.