You could say I don't like the term "Activist" very much. (Of course, if you wanted to be more honest about it you could say I have the term "Activist" with a passion you can only dream of.) To me the term "Activist" has a threat of violence attached to it.
I much prefer the term "Highlighter". Yes - as in the pen. Highlighters have numerous uses (some of which aren't actually recognised as standard uses - nail varnish and hairdye to name but two). They are mosty used to illuminate passages for easy reading - as well as useful when it comes to revision.
If you are wondering what colour ink this "Highlighter" contains - it is luminous orange.
Yesterday I had the strange experience of being allowed to be on a panel where my "Highlighter" streak really came in useful.
The discussion was on the subject of the "Purple Pound", as part of the "Beyond A Joke" strand of the Leicester Comedy Festival. (If you don't know what the "Purple Pound" is - it is the disposable income spent by the Disabled members of the population.)
I must admit to feeling uneasy when I found out that two of the other panelists were from the "Professional" sphere. One was involved with Access issues at Leicester City Council, and the other one was a Designer with their own Company. (The final panelist was a lady who works at the Phoenix Theatre in Leicester.)
What I had actually been dreading was the idea of sitting with a bunch of "Charity Professionals" who would tell me I was totally wrong about everything according to their textbooks.
The two professionals surprised me by saying something I have been trying to get people to agree with for what seems like forever - in order to have an "All-inclusive" building you really need to have a "Bassett's Licorice" approach to the people you involve at the initial design stage (as in get "Allsorts" of people - Disabled and able-bodied - involved).
The thing I found the most interesting about the discussion was when the audience were allowed to participate in the discussion. There were two points where I said a silent comment to what the audience members had said.
Before I tell you what the comments were which I agreed with I am going to try to explain two things to you which able-bodied people always seem to find difficult to understand.
The first is - not all disabilities are the same. I am not even talking about differences like using a White Stick, using BSL, or using a Wheelchair. I am talking about the spectrum of differences within each category of disability. For example, I know wheelchair users who use that as their only mode of transport as well as wheelchair users who can actually walk short distances or stand up for a short period when - for example - out shopping and needing to get something off a high shelf. I wouldn't dare to differentiate the ones who can stand up for short periods as "fakers" whilst saying the ones who have the wheelchair as their only mode of transport are "proper disabled".
The other thing the "able-bodied" population don't seem to realise is that there can be aspects of different disabilities which are similar (or may appear to be completely different but will result in the same outcome as far as people's actions is concerned).
Now I have got that as clear as I can - I will tell you what the comments were that I agreed with.
The first comment was by an audience member in a wheelchair. This person talked about the lack of space sometimes provided to get a wheelchair into a venue. Even though I can walk I actually need the same amount of space as a wheelchair does if I am ever likely to be able to judge the gaps between racks of clothing, etc, which shops appear to like to use as a kind of "Berlin Wall" to block out both people with sight problems and wheelchair users alike.
The second comment was one which I had heard once or twice before - but not from someone who actually has Epilepsy. They were complaining about strobe lighting, and other problems they have with some contrasts when walking around (light on metal rods between black carpet apparently is not a good idea if you are Epileptic). Now - I do not have Epilepsy (I do know people who do). However, I do suffer from two things which can have almost the same effect. Photophobia and seriously lousy "nightvision" (to the point of not being any remote use in the dark) is not a very good combination when faced with certain sorts of lights at certain speeds - and I mean "speeds" literally. I can get seriously blinded and disoriented (particularly at night) when faced with bright lights. The quickest way to make me feel very ill indeed is to stand me at a bus stop on a badly lit street as cars fly past me. If the gap between the traffic is at a certain speed my eyes have a difficult time trying to adjust between bright lights and pitch black.
The most interesting answer to a question put to the audience was one I wish more "able-bodied" people would take note of. The question was "Have you ever left a venue because you were made to feel uncomfortable?"
Not only was the answer a resounding "yes" - but by making the Disabled person feel excluded you are actually endangering your profit margin more than you might think. You may find this difficult to believe but - us Disabled people do not live in a vacuum. We actually have able-bodied "normal-sighted" friends and family, etc, who we can tell about our experiences in your premises (be they good or bad). So if - for example - I walk out of a branch Costa Coffee because I didn't like the attitude of the person who I asked to read the menu/pricelist out to me - I may tell my abled-bodied, "normal-sighted" friends about my experiences. My friends may never have set foot in that particular branch before but - the chances are - after me telling them about my lousy experience - they may not actually bother turning up to find out if I am correct.
The Chair made a comment which I found interesting yet - to me - only tells half of the story. The comment was that there is a difference between "Raising Awareness" of something and "Educating" people about it. I can raise awareness of the fact that I have friends who are lefthanded merely by pointing at them and commenting loudly that they are using the wrong hand when they write. This will only serve to make you aware that they are lefthanded, as well as annoying them (or worse - making them feel like specimen under a microscope).
If I were to introduce you to one of my lefthanded friends - and they told you about the challenges they face in a world designed for those of us who are righthanded - I would be playing a part in educating you about being lefthanded. However, what you did with the information my friend and I had given you when you left our presence would be entirely up to you. You could choose to ignore it or you could choose to put it into practice the next time you saw someone who was lefthanded struggling to do something.
One of my friends gave me a live, up close and personal example of this a couple of weeks ago. We had decided to walk from Leicester City Centre to a venue where there was an event we both wanted to attend.
Our route took us through the "Castle Gardens" area of Leicester. When my friend mentioned the word "steps" I was fully prepared to break my neck (and other assorted vital bones in my body) trying to go down them as my friend raced off into the distance.
As I started to gingerly make my way down the steps - using my feet to feel for the edges of the - flat, shallow - steps, I became aware of a white trainer marking the edge of the next step. The trainer was on a foot, which was attached (obviously) to a leg, which was attached to a body, which was attached to a head. There were two surprising things about the head that white trainer was indirectly attached to. The first was that it belonged to my friend. The second surprising thing was that the head was facing me to make sure I was OK. I hate following my able-bodied "normal-vision" friends in the dark - even on a flat surface - because I am so used to them racing off in the direction they are going without so much as a backward glance to see if I am actually behind them.
When we finally got back onto a flat surface I thanked my friend - and told them how surprised I had been that they had waited and made sure I was OK.
A further shock was to come when they told me why they had done what they did.
Some time ago they were worried that they might lose their sight (due to diabetes) - so they sent themself on a "Disability Awareness" Course. This course gave my friend a taster of what it is like to experience a variety of disabilities - including poor vision.
My friend had simply used what they had learned on the course to help make sure I was safe. I had not asked for their assistance - nor had I suggested we find an alternative route - but they had been kind enough to help me anyway.
The only time when I had to smile was when my friend commented that, "people don't think about the difficulties people with bad vision face". My reply was, "You mean most people don't think about the difficulties that people with poor vision face. I think about them all the time."
It is all very well educating yourself and others about the challenges faced by people with disabilities - but the next question is - how are you going to ensure you use your new-found knowledge to actually help people like me?
If everyone who reads my blog saw something in my blog posts which they have never noticed before and either - complained about it or - made a suggestion of a way to change it so I would benefit from it they would be doing themselves a major favour in the longterm.
Hold on a minute - I hear you mutter - why on Earth is changing something to help you (as in me) out going to help me (as in you)?
If me, my friends, family, etc, and our spending power are withdrawn from a shop or venue you like to frequent or visit - the shop or venue may find itself being closed down rather sooner than you might wish (due to a cashflow problem). Similarly, if I have a problem with the outside environment - lack of barriers around sheer drops, etc, I am not likely to revisit that area in a hurry. Any broken limbs I may suffer as a result of my visit could be put down to "not looking where you are going" - but if an able-bodied "normal-sighted" person finds themself in the same situation and complains about it something will get done so the situation is resolved so we are both kept safer in future.
I have lost patience with the idea that I have to include the caveat "I know my sight is worse than most people" every time I make a complaint - either on here or when I am complaining in person to my friends or anybody else. My sight shouldn't play such a big part in whether or not my safety is compromised.
As I said yesterday "I am not the Disabled one. I have 43 years experience of bad vision. It is those who enter my presence for the first time who are the Disabled ones."
My sight is not actually my problem (the same can be said of anybody's disability of whatever kind they have) - it is our problem. Together we can find ways of accommodating it - if you are as willing as I am to create a world where we can all have the same chance at getting the same prize - independence for all.
If you are still wondering about the "Talking Blog" reference in the second part of the title of this blog post - blame John Coster (the Chair of yesterday's panel). At one point he said, "you can tell Ineke is a Blogger - she talks like a blog post". Luckily he later reminded me that he finds my blog posts interesting.
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