This particular column is a little different than my others. It was originally my entry into the 2015 Canada Writes contest, but I didn’t win. However, my test readers thought it was pretty good so I decided not to let good writing go to waste and publish it. Originally this essay was my first for-profit eBook, but recently I’ve started to prompt it for free everywhere but Amazon (check out my stuff on KOBO or iBooks for the best prices). As part of the promotion, I am publishing it here as well.
Anyway, I hope it brings you new insight to some of the issues that people with disables face.
Normal is a Strange Word
I’ve always been confused with the word ‘normal’. To many, normal means ‘average’ or ‘natural’ or even ‘what everyone else does’. As a woman with a physical disability however; I’ve had social workers, members of the medical field, community activists and service providers (all of whom I shall now refer to as ‘the experts’) all talk about normal or normalization, as something rather different. To them the use of normal was often short for ‘this is what we see as normal’ or ‘this is what we see as normal for you’. This always seemed to create the need to have plans and meetings and keeping records on how well I was and wasn’t progressing towards being ‘normal’. Very rarely did these people ever actually listen to me when I spoke up about what seemed normal to me. I had to learn how to be abnormal to finally get some normality back in my life.
The first step the experts liked to take in helping me be more normal was the Planning Session. The experts would gather together (sometimes I was even invited), and then talk about what they would like to ‘help’ me with. Their stated idea was to help me achieve the goal of being more ‘normal’ or to move towards ‘normalization’ or to become more ‘integrated into society’ or whatever catch phrase they wanted to use that year. But it was usually centred around what ‘the experts’ wanted. Sometimes this was limited due to financial issues, which is a fair point as much has it pains me to admit. More often though, the planning was ‘limited by the experts’ own biases and limited imaginations as to what ‘normal’ really looked like.
A really good example of expert bias in my own life occurred during the late 90s. My then program manager was a vegetarian and she thought it was a great lifestyle choice that I should take on as well. At first she just wanted to share part of her meal with me. This was fine, and I enjoyed some of her meals very much, but I still enjoyed my beef, chicken and pork as well. However, as time passed it went from occasionally sharing meals to only having vegetarian meals at home. I’m still not sure how this happened but I do not remember ever being asked my opinion on the matter. As a vegetarian, I lost weight and always seemed to be hungry. When I went out for a Chinese buffet with a friend one time I was so hungry that it took three full plates of meat to make me feel full. Despite this and my open desire for a more balanced diet, it wasn’t until I moved to a new service provider that I was allowed to eat meat at home. The new staff didn’t care what I ate as long as it was part of a balanced diet and I controlled my portions.
The moral of this story to me is “Don’t start sharing food with a vegetarian.”
After the planning phase was done there were a whole lot of meetings. These could happen once every couple of months to once a week. In these meetings the progress towards the Plan’s goals were measured and analyzed. When the goals were on track, the experts praised themselves for their good planning. When the goals were not being met I was singled out as being the problem. Not very fair but there you go.
Of course all this data that the meetings needed to analyze had to be recorded. This meant a daily record sheet. Not only was what I did and when I did it recorded, but what I ate when I got up, whether I showered or not or washed my hair, were also written down by staff. Then the manager(s) would collate the material graphing lines of my so-called progress towards my plans goals.
And I didn’t get it as bad as some other people I know. They who lived in licensed group homes and not only when they had their bowel movements being recorded, but the size and shape of the movement was recorded as well. This was done even though they did not have any problems going in the first place! It was ‘were obligated by licensing to record this for some clients so we might as well do all clients’
And they described me as mentally challenged.
When I was out in community I soon realized just how abnormal the whole situation was. I mean it appeared none of the doctors or social workers or program managers had such a program to help them become more normal. Though a few really could have used such a plan in my opinion. Why then are people whose only sin is being disabled forced to do so?
It was when I learned the value of being ‘abnormal’ that I started to get things turned around. My first abnormal step was to simply ask why all this paperwork was being done on me (although the experts would say that it was for me). The experts said that various ministries (if you’re disabled in BC you have to deal with at least two of them) have standards that I was told had to be met in order to continue providing the funding that allowed me to live independently. This was a convenient shield for many of the experts to hide behind to absolve themselves of personal responsibility.
As time went by I started to talk to more and more higher ups in the ministry. It was from them that I discovered what the government really did and did not need recorded about me. Some basic stuff yes, a quarterly report on how I was doing (which I found out recently never got read either) was all that was needed at the time.
It was while I was learning to be abnormal that I found out that I wasn’t the only one asking about why all these plans, goals and reports were needed, in an attempt to make people with disabilities ‘normal’. Other abnormal people were out there as well. We all worked on making changes, often not even knowing who else was out doing the same thing. Recently we’ve gained some success in that the ministries that I receive my funding from have stopped talking about normal and instead, turned to the concept of ‘quality of life’ as its benchmark on how well people with disabilities are doing.
The biggest step towards abnormality was gaining (at least at some level) control of who ‘the experts’ were in my life. I’ve changed service providers several times always looking for one who would actually listen to me, and have a say in who was on my staff. I then took advantage of that and hired staff who listened and supported my choices. These staff members added to my voice against the other experts and finally I was able to effect real change in my world.
So where does that leave ‘normal’ for me. Well, it’s still a word I struggle with from time to time. Because of my past victories I do not have to behave as abnormally as I did before and the more that I moved away (often as fast as my powered chair could take me), from government- imposed plans with their invasive goals and records, the more normal my life became. Do I keep a diary of daily events in my life? Yes, but I choose to write it down. I choose what goes in there (and trust me Bowel Movements never make the list), and I choose whom I share it with.
And what could be more normal than that?