A picture is worth???

Yesterday I was looking for a generic MS picture. I went on Google (of course) and googled “multiple sclerosis” (of course) and looked at the images (of course).

Many of the images were what I would expect, brains and nerves, and diagrams with symptoms, and “inspirational” stuff. However, there was a category that I wasn’t prepared for – images from advertisments.

Before we go any further – a disclaimer. I would never be able to work in advertising. I’m far too literal. I’m sure there’s an art and maybe even some science to producing an effective ad, but I’m not the personal to do it.

Below there’s the images that came up. The first thing that struck me was that. in this informal poll, more of the ads had men in them than women. And MS affects 3 times as many women as men. 

So here’s the things I learnt. You can work out which ad each comment goes with yourself.

Men with MS pee themselves and one guy really needs to see his doctor because it looks like his liver packed in. Or perhaps he spilled coffee on himself? Let’s hope it’s the coffee.
In this post-Ashley Madison world I really thought one guy was having an affair or had just spent some time with “a lady of the night”. No. He has another issue with the same part of the body as the two men above. Wow. Men have a really targeted experience with MS. Just affects that one little part of the body.

Then there’s naked guy stretched out over two pages. He’s certainly doing better than curled up naked woman who someone has written all over. If you’re female and you have MS and see someone with a marker, get away from them as fast as you can

And Jenga Man. He’d be fun to invite to parties.

Then there’s the dolls…MS has something to do with Chuckie?!? Or your leg snaps off?!? For the love of God, no!!!

Here’s my ad. MS is serious and crappy. If you have been diagnosed, please get in touch with someone who can support you. If you know someone who has been diagnosed, give them the support they ask for rather than the support you think they need. (If you need a picture of someone naked you can have one of my dogs. They’re generally naked, but covered in fur.)



Will someone please tell me how to pull my pants up?!?

I thought I would share my evening with you… I’m going to have to repeat a few things about myself, so my apologies to those of you who know the deal. 

I’m a full time power chair user, but up until now I have been able to transfer myself on and off things. I kind of have both types of MS – a progressing bit and a relapsing bit. That bit never goes into remission either, but that’s another story.

3 months ago I stopped taking DMD (disease modifying drug) number 4 to have the break before starting number 5. The DMDs have done their job, as far as I can see, at keeping the relapses at bay, so I really just have progression.
When you stop your DMD, of course, there’s the chance that you will relapse. There’s a whole debate out there about how you manage that changeover to lessen the chance, but this time it hasn’t worked for me and I’m having a relapse. 

And of course it has affected my legs. And now I can’t use my previous methods to transfer. Bummer. Goodbye independence. For the last few days Ian (my husband and full time carer) has been having to transfer me every single time.

Today I decided enough was enough. My arms are quite weak but there must be some things I can do with sliding and using the poles I have next to the bed and so on. So I’ve been lift the arms of my chair and sliding my butt across. Sometimes it works, sometimes it doesn’t. I have a system from chair to recliner and chair to bed. Not 100% effective, but as long as Ian is in the house somewhere I think I can try it.

The problem comes with the toilet. And one part in particular …when and how do you pull your trousers down… and then when and how do you pull them up again?!?

I reached out to my friend, Dr Google. There’s all these helpful sites that tell nurses and carers what to do and tell people in wheelchairs what to do… but in all of them the diagrams show fully clothed people and the descriptions never mention when to deal with the pants!

Finally… I find one page that’s for people with spinal injuries and it describes when to pull your pants down. Great. So now what?!? I look for the next page… Tell me how to pull them up!!!! Nothing.

Then I realise the title of the site is Pants Up Easy! They are selling this humungous piece of equipment just to pull your pants up!!!! And no way are my arms strong enough to do that!!!! Just watch the video!!! I can imagine my arms flying up in the air – just not strong enough!

There must be an easier way. For heaven’s sake… there must be an easier way!!!

The time for a CDA is now

What does ADA stand for? Americans with Disabilities Act. This month the ADA is 25 years old. Congratulations! What about the CDA? Canadians with Disabilities Act? There isn’t one.

I notice the impact of the ADA whenever I travel or buy equipment. Whether it be as diverse as looking for a hotel room or looking for a pole to help me transfer at my bedside, it will say that the room or the appliance is “ADA compliant.” For Americans with Disabilities, the act is much more wide reaching, as it covers all aspects of their daily lives, from access to buildings to access to employment, education and healthcare.

For Canadians, there is no single act to legislate standards. Yes, it’s covered by Human Rights, but that’s not the same as a tailor made act that sets out standards that must be adhered to. Manitoba and Ontario have provincial acts, but for the rest of the country, there may be separate pieces of legislation, like building regulations, but nothing else.

Here’s a phone call I had with a hotel in the Inner Harbour in Victoria:

“Hi, I can’t find the details of your wheelchair accessible rooms on your website.”

“Oh we don’t have any accessible rooms. We don’t have to do that because it would cost too much for us to alter the hotel.”

A worldwide major chain in a prime tourist spot, within a few metres of the BC legislature. And I’m not welcome there. It costs too much. Sorry.

It happens everywhere. Restaurants, stores, businesses. A major fast food chain with no wheelchair accessible bathroom. When I was asked they told me they couldn’t afford. But you’ve served over 3 billion burgers. How can you not afford?

As I have mentioned before, I am advocating for better HandyDart provision in Kelowna. It is very difficult without having legislation to refer to. Basically we are appealing to their better nature and shaming them against examples from elsewhere. Yeah. Good luck with that, Michelle!

And this is with physical things, like ramps and washrooms and doors. It doesn’t begin to cover discrimination that is ingrained in the stereotypes and attitudes that we see.

I can only speak to my personal experience. I cannot work or go to college, but I imagine that there are many similar stories there..   These are the crucial situations that speak to the daily lives of those with disabilities.

What can we do? Barrier-Free Canada are campaigning for a CDA and they are asking for support. I am proud to see that the MS Society of Canada has already endorsed their campaign. It covers all disabilities – physical, intellectual, invisible (see the site for their excellent extended desciption of people with disabilities) – and sets out detailed principles of what the act should cover.

Unfortunately, it’s not getting much attention, either political or from the media. And it deserves it. We have the best opportunity until October 19th to get this issue into the spotlight it needs. I will be asking the following question to every candidate – and I hope you think about it too:

“The ADA is 25 years old. If your party forms the next government, how much longer will we have to wait for a CDA?”

Just Two Minutes – why disabled parking spots are important

I was introduced to the Facebook page and it led me to the discovery of an amazing video – the link is at the bottom of this post.

I’m pretty well known for my views of people who make things difficult for those of us with mobility challenges, particularly when it comes to parking. Hence, I was introduced to the wonderfully titled Facebook page “Shit Parkers of Kelowna.” There’s lots of these pages for many cities, it seems.

I uploaded a photo of my Friday night Fish n Chip outing, with the sidewalk obstacle course:

Photo of myself with a sidewalk blocked by a sign and an overhanging car
It caused a fair bit of discussion. Yes, the first sign could be moved, but the barriers behind it are permanent, so same problem, no solution. Really, people just don’t need to overhang the sidewalk.

The moderator of the page introduced me to this amazing video by @MEMOQuebec on disabled parking spot and the importance of them. There are many reasons people in wheelchairs need those spots, but none explains it as well as this video. An excellent public service piece that deserves to be shared far and wide! Please watch!