The power of the individual 

We often think that as an individual our actions are not enough to make a difference. That’s not always the case, and given the challenges with the new occupant of the White House, it’s more important than ever for us to act to make a difference.

If you a disabled, maintaining your independence can be a challenge. One of the main aspects of being independent is being to travel to places. For many disabled people, the only option they have to travel is by public transport. If you live in a major city that should be relatively easy, but it’s not always the case.

In 2012, Doug Paulley, a wheelchair user, was trying to get home by bus. The space on the bus that was meant to be for wheelchairs had a pushchair in it, with a child that was asleep. The mother refused to wake the child and move the pushchair. The details are here.

This certainly isn’t the first time this had happened, but Mr Paulley is a disability activist. He took his case all the way to the Supreme Court and in January won a ruling that drivers must try to get the other passenger to move. Excellent!
Not so fast. Just a few days after the ruling, this happened. Once again, the person in the wheelchair, Kirsty Shepherd, was refused entry to the bus because of a pushchair being in the wheelchair spot. The mother offered to move it, but the driver, who was clearly having a bad day, said no and ‘terminated’ the bus! And look at the reactions of passengers – rather than siding with the disabled person, there were shouts for her to get off so that they could all get home.

The power of the individual. The mother with the sleeping child. The bus driver that wouldn’t challenge her. The bus driver who was having a bad day. All individuals whose actions had a major impact on the disabled people trying to use the bus, a negative one.

Doug Paulley, taking the case all the way to the Supreme Court. Kirsty Shepherd who came forward with her story. The mother that was prepared to move her child in the pushchair. All individuals  whose actions had a positive impact for disabled people. 

What would have happened if the people on Ms Shepherd’s bus had stuck up for her, instead of shouting at her to get off? Could you be the person who stands up to be the positive change? 

Somehow, I think we are going to need a lot of people to stand up for the positive change in the next few years.


The long reach of a publication

I know a lot of you academic types. You write things, it gets published. Maybe it gets read, maybe it doesn’t. What if I told you that a document about categories for an economic report would be used 25 years later throughout the world, and continue the use of outmoded and derogatory naming for disabled people?

Last week Ian got invited to a volunteer event with the City of Kelowna. It was to launch a volunteer initiative for Canada150 to log the volunteer hours of Canadians throughout this year and to inspire them to volunteer more. When he told me about it, I thought it might be a way to promote the two organizations I’m a board member with – the MS Society and Disability Alliance BC. I went to the website for the event, and that’s where things started to come unstuck.

I logged in and needed to add my organizations. MS Society – no problem. Disability Alliance BC? Missing. There was a process to add  an organization, so I started to do that. First step – what category is the organization? The only one that remotely ‘fit’ was “Services for the Handicapped”.

Handicapped?!? In 2017?!?

I sent an email to the organization behind the initiative, Volinspire. A speedy response offered to change it to “Services for Special Needs and Diverse Abilities” – a step backwards to a couple of euphemisms as far as I’m concerned. An email discussion ensued where I gave my case for people/persons with disabilities. I find it bizarre to have to explain we have a Minister for Persons with Disabilities, Canada is a signatory to the Convention on the Rights of Persons with Disabilities, the main advocacy organization in Canada is called the Council of Canadians with Disabilities, but, for some reason, people here in Kelowna think that “diverse abilities” sounds nicer! 

You may think it’s strange that I am arguing to be called disabled, that that isn’t something you would expect. Here’s how to think about it. What is it that disables me? Is it being in a wheelchair, or is it that I live in a society that isn’t designed with my needs in mind? I’m not sure if I’ve shared my favourite video on this subject with you, but if not, here it is:

Get it? Good.

One of the emails from Volinspire said that the form I was completing on the website was filled with data that they had received from Canada150, which came from a StatsCanada website, which in turn came from the UN, from something called ICNPO – the International Classification of Non-Profit Organizations. A few more turns with Mr Google and I discovered that this classification had been written by Johns Hopkins Centre for Civil Society Studies, in conjunction with the UN. How strange that the UN would be promoting the use of the term handicapped?!? And the ICNPO was being used everywhere – the term handicapped had been embedded into countless documents worldwide.

An email was sent to Johns Hopkins – and a really speedy reply came.

This is where the long reach of research and documents comes in.

This classification system was written 25 years ago. Its purpose is to help statisticians to compare work in nonprofit and for-profit organizations and when it was written, it drew heavily on an even older classification system. I guess we are lucky that it said handicapped and nothing worse! The people who wrote it had no idea that it would be used, 25 years later, for the public to add their organization to a volunteer initiative. Here’s what Johns Hopkins had to say

I should mention that ICNPO is in no way intended to dictate or endorse specific terminology to be used by nonprofits themselves in either their names or the descriptions of their programs/missions. It is, rather, intended to allow statistical agencies across many different countries and cultures to have a common brand definition of the fields of activity in which nonprofits operate. 

Hmmm. But once it was out there, there was no way to check how it was being used.

They also told me that they are in the final stages of presenting the revisions to it to the UN, and the term that will be used is  – guess what – yup – persons with disabilities. It won’t be available until the end of the year – and how will it filter through the myriad of uses the old language has been used for in the last 25 years. I’m sure we will be discovering this use of this old report for many years to come.

I forwarded it to Volinspire. Their response? They’re going to have a discussion and let me know what they decide. 

New Year, New Me, blah blah blah

I’ve never been one for New Year’s resolutions. New Year seems to come at the wrong time of the year for it. It’s cold outside and there’s all that Christmas chocolate staring at you. It just seems that if you’re going to make a change, you should give yourself some chance for success!
It’s not that I’m against making changes. When I was in my late teens I decided to give up eating chocolate and crisps (chips for North Americans…) for Lent. I’m not religious, it just seemed that it was a manageable amount of time to aim for and I had a certain amount of guilt for all the pancakes I’d enjoyed without the payback afterwards. You might be surprised to know that I was very successful at it! How? I replaced chocolate with Caramac and crisps with Wotsits and Monster Munch. Sort of did it by the than the spirit

11 years ago I decided it would be good for me to lose weight and get fit. I did a good job of it – lost 70lbs, went to Curves 5 days a week, for a couple of years. Skinny(ish) and fit. Then I got ms and put the weight back on to the pound of what it was before, and decided to spend my life sitting down. Go figure.

In 2016 I decided to never to share or comment on anything that originated from the person who says his middle name is the main ingredient for guacamole. He says so much utter garbage that I decided that even sharing his most innocuous posts was encouraging him. I’m sure my one little click means nothing to him, but you’ve got to start somewhere. And it was easy, and now it’s become habit, which has to be the measure of a successful resolution – you no longer think about it, it just becomes part of what you do. 

Some people are really good at the resolution thing, because they take a completely different approach to it. Dani is excellent at it – she takes a theme for the year, but before she does it, she critically examines what that’s gong to mean for her, and what it will actually look like. Read about it here  – I think her theme of Enough for this year is going to be a challenge that’s she definitely up for.

Every year I facetiously say that my resolutions are that I’m going to eat more chocolate, watch more football and hug my dogs more, because that’s achievable, and yes, that’s what I’m going to do this year too. And the basis of those resolutions is quality of life – that’s what’s important – to enhance the quality of life of yourself and others. And, of course, if you enhance your quality of life, it doesn’t come at the expense of others.

I like to think of my “resolutions” in terms of different projects, which start whenever it’s the right time, no matter whether it is a new year or not. Last year’s massive project was Winnie and everything that brought. This year that project continues, of course, with us looking at more things to do, more places to go. There’s a couple of other projects on the go, and a few new ones on their way too, but it’s too early to talk about them. 

Whether you choose resolutions or not, keep them or break them, I hope 2017 treats you well.

Deefer - many bones to chew means quality of life!

Quality of life for Deefer

Share your opinion on the proposed Accessibility Act – or if you don’t have an opinion – share mine!

Hopefully Canadians know that the government is currently conducting consultation on proposed disability legislation. I’ve mentioned it before, and it’s certainly a hot topic. The Americans have the ADA – Americans with Disabilities Act – which is 25 years old, but Canadians have nothing.
Right now, the consultation is ongoing. If you live in Victoria or Vancouver – or indeed other large cities across Canada – you might have been able to take part in a face to face meeting. For the rest of us – and those in the big cities that weren’t able to attend the meetings – consultation is being done by an online survey. 

Accessibility Legislation Survey
I hope that all Canadians will take part in the consultation one way or another. If you do, here’s a few things to think about.

The first thing is – what is this Act to be called? As you will have read in my previous posts, words have meanings in the disability world, just as they do anywhere else. The Americans plumped for Americans with Disabilities, but that doesn’t really say anything about the intent behind the Act. The Canadian act is initially being called an accessibility act. That’s such a limiting title. It seems to imply physical things – ramps, signs, Braille. Things that help you get into building. But once you get into the building, what then? Are the services delivered in a way that make sense to you? Are the opportunities presented in an inclusive way? Disabled people need things to not only be accessible physically but to be inclusive, so it would be better if this was called the Accessibility and Inclusion Act.

Second – just what is it to cover? This is, after all, a federal act. As you can hear, I’m originally English. I have to say, the federal/provincial system still befuddles me, in its scope and bureaucracy. I had a conversation with an MP before the 2015 election and I was talking about the need for this act. For him, it all went back to the constitution and every example I brought up of how disabled people’s lives would be changed, he had a reason why that was not a federal issue. I find that sort of compartmentalized attitude infuriating! For me, the first job of the federal government is to raise the bar, not to nitpick the responsibility over each individual nut and bolt. Their job is to set the standard high so that everyone else follows, and to follow it up with actions. One example would be a National Building Code. How great it would be to have a common set of standards for accessibility across the country – and for the federal government to follow that by ensuring every federal building at least met the code, and demonstrated innovative ways to go beyond that minimum.

However, that leads me on to the next point. It’s got to have teeth. There’s no point in having these standards held high with no enforcement here on the ground. We have to reward excellence, share examples of good practice so that no-one is reinventing the wheel, and when organizations fail to meet the standards, there must be legislation to enforce compliance. 

There’s one point that comes first, last and everywhere in between. And that is – Nothing About Us, Without Us. What does that mean? Here’s a local example. In my recent discussions with my City about the needs of disabled people, I pointed out this discrepancy in the way it does business. The City has an agriculture committee, and on it are representatives of various sectors of the industry – fruit growers, the wineries, crops and so on. The City doesn’t have an accessibility committee, but any committee working on short term projects that involves disabled people has representatives of the health authority and that sort of thing, but no disabled people have a place at the table. Hence, if they want to know about growing apples, they ask people that grow apples. If they want to know about disability issues, they ask people who know stuff about disability, maybe, but have no lived experience. The Act must be developed with disabled people playing key roles. Disabled people must be the major players in all parts of the Act’s ongoing implementation. It seems so obvious, but clearly it isn’t.

I urge you to take part in the consultations. Do the survey. Talk to friends, colleagues, family about the issues. It’s time to make a difference. 


Representing Disabled People on TV – I’m Speechless¬†

The representation of disability on tv often leaves much to the imagination. Disabled people are often figures of pity. Their disability is centre stage, not them as individuals. In Scorpion, for example, the main protagonist’s sister had MS. She seemed to be okay – then she was in hospital and she died! Imagine if you’d just been diagnosed – gulp! Okay, you know it’s a tv show, but surely they must have checked it out? Surely they wouldn’t get it that wrong?!?
Last night I was watching Blue Bloods. Two of the cops were on crowd control while a tv cop show was being filmed. They were talking to the on-set advisor to complain about some of the procedures they had seen, and they were told “it’s not a documentary”. It made me think. No – it’s not a documentary. More people watch it than a documentary, so perhaps there is more responsibility to get it right?

That brings me to Speechless, the new sitcom on ABC. It revolves around the DiMeo family, and JJ, the eldest son, a teenager, has cerebral palsy. He’s in a wheelchair and can’t speak. He uses an AAC device – a word and letter board with a light pointer. And… wait for it… 3 episodes in and I think it’s doing a great job!

Sure there are issues. JJ communicates at a really rapid pace – he barely points at words and they’re spelled out for the person reading it. In reality, using any AAC device is a very slow process, but I’m willing to cut them some slack – it’s a 30 minute comedy show.

I want to concentrate on the issues raised in last week’s episode – its third episode:

Letting go: JJ has negotiated a whole day away from his mum, with his care aide. Her concern for his wellbeing shows a common concern for carers – how do you let go, knowing all the times that you have had to step in and help? I have a friend who has just been through that with her teenage son going out with his friends on his own for the first time. I experience that with Ian regularly – I tell him I can do something independently that on other days I have failed to do. I tell him to channel his inner Elsa and “Let It GO”! Obviously, the concern is real, and the costs of failure can be high, but, as disabled people, we need to have the independence to try.

Inspiration porn: When JJ and his carer, a black man called Kenneth, line up to buy a hot dog, everyone allows them to go first, saying that they are an inspiration. At first, this is great fun for them to see how far they can push it, ending up at a Dodger’s baseball game, but after awhile, Kenneth pulls away from JJ to enjoy the events for himself, and JJ feels the frustration of being taken for granted. Sure, I’ve happily gone to the front of the line – lining up for the cruise ship in LA, in temperatures of over 30C would have made it a medical emergency if we hadn’t been taken to the front – but being pawed by strangers in public who want to tell you that you’re an inspiration, or hearing “Good for you!” when you tell people of something you’ve done that wouldn’t get the same mention for a non-disabled person is tiring and can be demeaning. If you’re still uncertain of what I mean, watch Stella Young tell you all about it.

Caregiver guilt: JJ’s family go out to do something they can’t do with him – they go paint balling! At the end of the session, the daughter shouts “this is the best day ever!” and they all stop having fun as they realize it’s only because JJ isn’t with them. Again, my response returns to Elsa “Let It Goooooo!” It’s healthy! I need time apart from Ian just as much as he needs time away from me! Luckily, I now have my CSIL funding, so I have respite built in to my week. I find it interesting that it’s always thought of as respite for the carer – but we, the disabled people, need respite from the carer too!

Losing your voice: JJ’s carer left behind his AAC device – his word board. He told Kenneth that he had taken away his voice. While this was a very physical representation of it, disabled people lose their voice in many ways, from JJ’s example, to people finishing our sentences for us, to the structures in society that prefer that non-disabled people speak for disabled people. I have been dealing with this with the City of Kelowna and its Community For All Ages project which has no disabled people on the main committees. We must continue to demand that there is “nothing about us, without us.”

Ian and I laugh at so many of the situations in Speechless, as they are so similar to those we have been in, as a disabled person and a carer. And there is so much about our life that we laugh at, in ways that others might find irreverent or not politically correct. I asked a disabled friend, do you think non-disabled people find Speechless as funny as we do? Perhaps they do, but for different reasons. I’m going to keep watching, and I’m going to know that the jokes, for once, are for us.

Happy MS-iversary to me!

Here we are again – another year older, another year wiser? Certainly another year with MS – September 1st makes it 8 years.

As my loyal and regular readers (?!?) will remember from last year, I choose to celebrate this day. Why not? A celebration means cake!

It’s a chance to look back at the year and celebrate all that has been and look forward with hope with all that is to come.

What a year it has been! It’s been the year of Winnie – our Winnebago, and it is no surprise that today finds us on the road again, for our longest trip year. A whole two weeks. And what a difference it has made to the quality of life of all 4 of us – me, Ian, Lacey and Deefer.

So this year, I choose to celebrate:

  • The time of the road. The time spent looking out of that big window at every changing views that are different than the ones I see at home. The time on the road is also my journey with MS. This year has had its bumps – a major drug fail that reminded me of how lucky I am with what ability I have, and, of course, the onward march of the progression of MS. But I’m still here, I’m still enjoying life. And life is all about the journey.
  • The time parked up. The campsites – the marmots! The breakdowns – the drama! But also the time parked up at home. There’s been a quality of life adjustment there too, we having CSIL and getting my own personal assistants so that Ian has some freedom from me. It’s all to do with quality of life, however you can get it.
  • Technology! Where would we be without it?!? Staying in touch by phone, email, Facebook. All so very important. Everyone seems so much closer, no matter how far away they are – the laughs, the photos – so many photos! And meetings – doesn’t matter where I am, I can take part by phone, by online conferencing – what a life.
  • Making a difference – or at least trying to – yes, City of Kelowna, I mean you! This has been the year when I start to feel like I’m involved in the advocacy things that are the right fit for me, where I can make a difference. My heart is still very much with the MS Society, but I’m also spreading my wings to new challenges. So much to be done for disabled people, so many incredible people already leading the charge. I’m just grateful to be able to be a part in this.
  • Family – and friends that have become family. As I write this, we are waiting the arrival of Kiyara. It really brings it home to me when I realise that my granddaughters will only ever have know grandma in a wheelchair. (Grandma scuba dived?!? How did she get that chair underwater!) So many changes, I’ve been so many different people. And throughout it all, family and friends have been an ever present source of strength and comfort.  

Thank you, everyone who has been a part of it. 

And the year ahead – who knows?!? Can’t wait!

Where do you live?

This is a long post. Stick with it. There’s some tough stuff in here.

As part of my volunteer work with the MS Society of Canada, I’m involved in a campaign to look for better housing solutions for people with MS who need a high level of care but are under the age of 65. Here’s why.

For a small proportion of people with MS, symptoms can come on really fast, and when you’re still young. When that happens, you’re in a wheelchair full time. You probably have limited movement in your limbs. Maybe swallowing, speech, eyesight issues. You’ve lost your independence. 

If you’re lucky, like me, and you have someone at home that can care for you, like me, you stay in your own home, like me. There is a program in BC called CSIL – Choice in Supports for Independent Living – where you get control of the funding for your care, and you employ carers to come into your home. I do that too, as it gives Ian and I a break from each other! (Or as ‘they’ put it, respite for the carer from me!). But that only funds you for up to 4 hours a day. What if you need more care than that and there’s no-one at home who is capable of doing that?

The answer is, you move to a care home. A residential facility. A senior’s home. All names for the same thing. But what if you’re in your 30s or 40s? Yep, that’s the only option for you. And, once you enter one of the facilities, that’s it. You live the rest of your life there.

In BC 60% of the people in residential facilities are aged over 85, and 15% are aged under 65. 

So the life of one of these homes is built around the elderly. The social life, the music, the pictures on the walls, the expectations of the staff. But you’re still young inside! You don’t want “old time music” and bingo – you want movies, and the Internet, and to live with people your own age.

This campaign is trying to do everything it can to bring this situation to the attention of those who have the power to make a difference. The politicians. Our MLAs. And for them to want to make a difference, they have to know these people, the ones who live this life.

In July I met with Steve Thomson and Norm Letnick, two of our local MLAs. They were interested in the topic and the statistics, and really got stuck into thinking about what the lives of these people are like. I explained to them that in many ways, without Ian, I’m close to being in one of those facilities – at which point they looked at me in horror and joked about the poor staff who would have to look after me! (It doesn’t sound funny, but it was. You had to be there…)

The key point of the meeting was for me to ask them to meet people in our community who are in that situation – young people who are living the life of an 85 year old in a care home. They both said yes, to their credit – “they’re our constituents! Of course we will see them!”

The next stage was to find someone in this situation and ask them if they’re willing to meet with the MLAs – because it appears that not everyone is keen to talk to politicians – go figure. At this point Sherry (our programs and services coordinator) stepped in, and found two women in the same facility that would be prepared to talk to us about this. And that’s where we got to, today.

I went to visit this care home firmly thinking about the campaign, the MLAs, the possibilities for change. When I got there, I realised this was all about me, partially. 

We entered the facility and it was lovely. None of that clinical smell. The hallways, the decorations. Birds in a cage. A hairdressers called Scissorhands. The first sign that this was a senior’s home was this beautiful mural of old photographs of Kelowna – not because we were in a museum, but because this was age appropriate for the people who lived there.

We turned a corner, and there was an open area, again beautifully laid out, leather sofas but no-one sat in them – because everyone was in wheelchairs, and very, very old. I could feel this tight grip around my throat, because I suddenly realised that this is where people my age and younger, who are not much ‘worse’ than me, live. It all became very, very real.

We got to the room of the young woman we were meeting. I’m going to keep this vague, for obvious reasons – her privacy. She’s in her early 40s. Had MS for a few years more than me, and been living in these homes for the last 5 or 6 years, so really needs a high level of care. We talked about what she would want to tell these MLAs. The first thing – the loneliness. She spends most of the day alone, in her room. She hasn’t left the facility since she arrived, 18 months ago. There’s no-one her age, nothing to do for her interests. People see her disabilities first, but forget that behind those is a young, vibrant woman, who not that many years ago lived a full, very active, outdoors life. She’s still there. She’s not ready to be 85.

We also asked her about a few things on her wish list. I’m not going to say what they are yet, just that Sherry and I are going to do the best we possibly can to make them happen. We have a mission and nothing is going to stop us!

I came away choked up with anger. Why is it like this? Why has no-one stopped this from happening? 

The next step is September 19th, when the MLAs come with us to meet this amazing woman. From there, the ball is in their hands to some extent, but I will be that squeaky wheel. There must be change for people like this young woman, and the 4500 people like her in BC. There are many creative solutions that could be tried. The three of us brainstormed just a few in our conversation – if we can do it, so can anyone else. There has to be that will to change. 

I have told people so many times how lucky I am, and they don’t really get it. I have great benefits, great LTD, I live at home with a husband who didn’t run for the hills when I got sick – and 50% of them do! I love my live, my dogs, everything we do together – and not to mention this summer and Winnie. Sure, my MS is not an easy thing to live with, but I have learnt that I am very fortunate, and there are too many whose lives have been made a living hell with MS. People ask me why I spend my time doing advocacy – and that’s why. It’s not because I want better HandyDart for myself, or better ‘age appropriate’ housing (to use the jargon) for myself, or whatever it is that I expect the City of Kelowna to wake up and do. It’s because I cannot live with myself having met these people and knowing that with a few emails and a little bit of my time, I could possibly make their lives a little more bearable. I would challenge any of you to meet these people and see if you could walk away and do nothing.
The photo is of the wall in her room – of paintings that she did herself a few years ago when she still had movement in her arms and hands. I asked if I could take a photo and share it on my blog, and she said yes.