“There are no norms. All people are exceptions to a rule that doesn’t exist.”
― Fernando Pessoa
BY: KEVIN ALEXANDER
One of the most misunderstood terms in supporting people with disabilities is Normalization. What is ‘normal’, how do I get someone who is severely limited to appear normal, act normal, or be normal? Who decides what is normal? In fact the term Normalization originally had little to do with helping people appear normal.
Normalization is a concept first articulated by Bengt Nirje, is a term that represents offering the same patterns of life, same conditions, and same opportunities for everyone, regardless of label, skill set or ability. Give everyone the same shot to create the life of their dreams regardless of their perceived ability.
I have been working on the front line for over 20 years. Many people including managers, professionals attempt to convince me what ‘normal’ or ‘Normalization’ is. I have been instructed to dress people ‘normally’, cut or brush hair ‘normally’, force people to act ‘normally’. Every time I get such a request I ask “what is normal?” It is interesting to watch people struggle for an answer.
What I have learned over my career is that ‘Normalization’, in any form, does not make sense. In fact I argue that it is counter productive and distracts one from the gift of working with people with disabilities.
Whether it is helping someone appear normal or trying to give someone the same life opportunities as the normal population, Normalization seems to turn a blind eye to the voice of the person we are supporting. Trying to help someone with a disability fit into our societal norms ignores the need to help society fit into their norms.
I have worked with many brilliant people with a unique way of seeing or living in this world. They often exemplify the enormous gap between the social norms and their personal norms. Because of their uniqueness, they are isolated. No amount of ‘normalization’ can help them as they are so far from the spectrum of ‘normal’, yet so happy and content in who they are.
I argue that many of the great innovators of our time have not followed the ‘normal’ path, nor have they been offered the same opportunities as everyone else. From Internet to the combustion engine, from rock and roll to personal freedoms and rights, all growth and inventions have come from a place of working outside of the norm and usually from people who live outside of the norm.
People with special needs have a gift! They offer us teachings on other ways of living, seeing and communicating! I do not know of a definitive ‘normal’ way to live but I know that my ability to live in this world is directly influenced by the people with special needs I have worked with and what they have taught me.
I am reminded of Jimmy. Jimmy was a group home resident that I worked with a few years ago. Diagnosed with Autism, he was prone to ‘get stuck’ on asking “why” all the time. “Why are we eating right now?” “Why are you wearing that colour today?” “Why is the grass green and the sky blue?”
Most people supporting Jimmy answered as honestly as possible, some joked with him giving fictitious answers. Jimmy never seemed to react to the answer. As long as you said something after his question, he appears satisfied.
Jimmy also did not like his hair to be cut. There was no problem with his personal hygiene, but his hair cuts were a certain disaster. He would scream and kick as soon as the shears came out. The only incident of aggression came around haircuts. So I asked Jimmy “Why do you not cut your hair?”
And for the first time Jimmy answered, “Because my hair is a part of me.”
How can you argue with that logic? What was most surprising to me was that I felt the same way my entire life. I did some research and discovered entire societies that did not cut their hair because they thought it was an extension of themselves.
Jimmy has the right to refuse haircuts. He should have every right as you and I do. Normalization is not about appearances or about helping someone fit in, it is supporting people in being whoever they want to be and expressing themselves however they wish within the basic rules and laws of a society.
Jimmy is not breaking any laws and if he wants long hair, wants to wear dresses, butterfly wings, then I will support him. I do not care if other people find it strange, he has a right to be himself and we have the duty to help him manifest his choices.
One of the toughest skills in being a front line support worker is letting go of my lifestyle choices and supporting another in theirs without judgment. I continuously try to make a point of not judging, but I still catch myself criticizing, doubting and trying to force my experience on to others.
All great ideas start with an open mind. All great support work starts from the same place. I am there to teach as much as I am there to learn. It is a mutually beneficial relationship. If I try to force my ideas or way of life on someone, I instantly bruise, if not destroy, that relationship.
Normalization is not about making someone normal, or offering a normal life. It is about treating the person you are working with as if they are normal and should be respected. Their choices, ways of life, fashion, lifestyle, communication, or whatever they do is normal. In fact we can learn how to live our life with more openness from the people we support. Maybe we all need a bit of normalization.