Copyright 2017 Cathy Grant
Published by Cathy Grant at Shakespir
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Table of Contents
This collection of my columns from the website at Selfadvocatenet.com was written and collected together thanks in no small part to one of my permanent staff Sandy Addison. He has helped me over the past three years getting my writing career off to a good start.
As well Loraine Dunlop the sys admin of the SelfAdvocatenet was a big help getting me started with writing my column. A big thank you also goes out to Bryce Schaufelberger for directing me to the website in the first place.
Finally, two big thanks to my brother in law Mike Rogers for letting me use his photograph for my cover and of course my best friend Ed Harkness for his ongoing inspiration and support.
Well this is a surprise. When I published, my last essay Staff a Necessary Evil the furthest thing in my mind was to start writing a monthly column. Then a longtime friend of mine suggested that I could advertise my essay on the website that he worked on. Following up I talked to the Wed admin Loraine who asked not only asked me to publish a column but offered to pay me as well! Having learned long ago not to look a gift horse in the mouth, I jumped at the chance. The following essays are the result.
While some of the essays address local issues, many are broader in scope, and if you’re an admin/editor of newsletter or website and are interested in publishing one of these essay’s or maybe having write something for you please do not hesitate to leave me a message on my Facebook page.
Take my Present … Please!
In the Gospels, it is written that it is better to give than to receive, but here’s the problem; if there isn’t someone willing to receive the gifts, nobody can give them!
I think this is especially true when it comes to people with disabilities. I’ve often run into the situation where I’ve gotten a birthday gift (cards seem to be okay for some reason) for a friend or family member and they’ll say ‘Oh you shouldn’t have’ and not in the friendly ‘ah shucks’ tone but in a more paternalistic ‘I shouldn’t have done that’ tone. Or when I’ve offered to buy coffee when were out they’ll say ‘You can pay for it next time’ only ‘next time never comes’. While these people are truly trying to be kind, in their kindness they are in fact; robbing me.
What they are robbing me of is the opportunity of feeling the joy of giving. The sense of community by sharing something with someone and not just being the one that gets shared to. In looking at this from a very large perspective, giving something to another is showing your love for that person, and as a group, disabled people lack as many opportunities to show love as ‘normal’ people do.
The solution to this problem in my opinion is communication (get used to this solution people I think poor communication is at the root of a lot of people ills). People with disabilities have to speak up for themselves more and ‘take’ giving away from their friends and family. Let the people who say they care about you know how much you’re hurt but being unable to give to them. I done this many times over the years and I’ve been pleasantly surprised by the wide eyed looked I’ve gotten from people when they realize what they have been taking from me without even knowing it.
And for those family, friends and staff people who reading this, please realize just how much you are hurting the ones you support and love by not letting them give you presents, or by just letting them buy you a cup of coffee every once and while. On the other hand, when you take their presents with grace, you will be surprised at how much you will actually be giving back.
Yes Virginia it is a Big Deal
On December 1st of 2015 the world got a little brighter for everyone on Persons with Disability (PWD). On that date the total assets that someone could possess rose from $5,000 to $100,000, and receiving monetary gifts became less likely to cause problems with the Financial Aid Worker (FAW). While the changes were not earth shattering or necessarily life altering, it wasn’t nothing either. However, I was surprised by the reactions of many people both disabled and abled alike.
“Where are people with disabilities going to get $100,000?” seemed to be the reaction of many. Or “Well it wont affect me, so who cares?” was another common reframe. Both these reactions seemed to arise from the continued belief that People with Disabilities are universally poor and will always remain so. Or support a belief that people with disabilities cannot or should not be allowed to handle their own finances for some reason. Such opinions also miss a second more fundamental point of living with a disability within British Columbia, that being the constant surveillance that some FAWs put disabled people under, and the fear and stress that this can cause.
On the first point; people with disabilities being universally poor. One of the major contributors to that belief was the low asset limit. Most disabled people one time during their lives will actually have money. Inheritances, being gainfully employed, insurance claim settlements, heck even family members, or the clients themselves, winning the lottery can be sources of funds that a disabled person could get sometime during their lifetimes. Up till now little or none of these funds actually stayed in the hands of people with disabilities because of the $5,000 limit.
It wasn’t necessarily a lot of money, often time it was between five and ten thousand, but it could have been been higher. But in any of these cases, once that $5,000 limit was met people had three options. One: They could spend it until it hit $5,000 meaning that they could look frivolous and spendthrift to an outside observer who didn’t know the reasoning. Two: They could open a trust fund or annuity; but that meant lawyers and restrictions on how and when the money could be spent. Or people could use the public trusties and watch their monies slowly be eroded by fees. Three: People with Disabilities could open an Registered Disability Saving Plan (RDSP) and while this did keep the funds under the control of the disabled person it also locked away the funds for extended periods of time.
As a personal example, years ago a car hit me when I was in my wheelchair. I wasn’t seriously hurt, but I was given a small settlement to help with medical costs, pain and suffering etc. Unfortunately, I was told by my FAW at the time that I had to spend it or lose my payments; and that is why I bought my first computer. Not a bad thing to spend my money on I admit, but I would have much preferred to have had the choice of it instead of being forced to.
With the increase in the asset limit to $100,000 people on PWD will be have greater control over their personal finances. No more trust funds of small amounts of money. No more having to trust family members to ‘hold’ the monies for you, no more lawyers or added paper work. Just take the money put it into the bank, or possibly investing it, if you so choose. The simple reduction of stress and red tape for many people will be a significant increase in their quality of life.
As for the Big Brother component, many FAWs not only see it as their job to make sure people with disabilities stay in the financial rules but take some perverse glee in doing so. Abled people do not realize that FAWs have the right to go through a PWD recipient’s financial history and records to make sure that they’re under the asset rules. Many people with disabilities live in a state of constant fear of losing benefits because they were given a gift or received a small inheritance. With the asset limit increased to $100,000 much of this concern is no longer valid. It’s just so much higher that it not worth the time or effort for FAWs to try and keep track of every dollar being spent. So strongboxes holding last year’s Christmas monies can be opened, the joint accounts can be shut down, the money put directly under the disabled person’s name and that locked in RRSP you have can be openly talked about. All without the fear of the FAW bogy man coming and ruining your life. This means that for many disabled peoples their true financial worth can be openly determined without fear of repercussion. Again lowering stress increasing quality of life and putting an end to the myth that people with disabilities as a group cannot be trusted with their own money.
Or at least this will happen in the near future. Right now things are in flux at the Ministry of Social Services as they figure out what these changes all mean to their own procedures. If you want to move money around right away, give your FAW a call; explain what you want to do and find out what the implications are. Once you get a ruling, make sure that the person you talk to writes that ruling into your permanent file. Keeping a record of who you talked to, when you talked to them and exactly what the final decision was is not a bad idea as well.
So while the increase in the asset limit might not change things for people in the short term, the fact that people with disabilities can opening keep the assets that they have acquired like so many ‘normal’ people will lead, over the medium and long term, to greater self-confidence, a sense of greater control and very definitely less fear for those involved. And that is a very big deal.
A Passport to Fun
May is my busiest month of the year. I take the Hell’s Gate tour, up in the Fraser Valley one day. All the museums and gardens out in UBC another, on a second. The aquarium in Stanley Park; along with the harbour tour, on a third. In Squamish I visit both the train and mining museums then take the Sea to Sky Gondola up to enjoy the scenery. Back in Vancouver for a bit of culture I hit the Art Gallery and the Bill Ried Gallery: And this isn’t even a full list. However, I’ve saved the coolest parts till last. Now only did I get into all of these places absolutely FREE, but because I did visit them I get into them for FREE the rest of the year.
This is all thanks to a really great program called the Tourism Challenge. It coming up again this year and if you act quick you can get into it as well.
As some of you may know, my best friend and I have been volunteering at the 374 Pavilion in the Round House Community Centre for the past nine years. (We’re there pretty much every Tuesday so come by and say hi sometime) Most of the time, it’s pretty fun as we get visitors from around the world coming by to check out the steam engine. However, another reason why we volunteer is to take part in the Tourism Challenge.
What is this Challenge you ask? I’ll throw a link to their website at the end of article. In a nutshell it’s a way for people within the tourism industry to check out other tourist sites so that they can provides firsthand experience and word of mouth approvals to tourists who come through the Lower Mainland in the Summer. A lot of the participants are employees at various hotels and restaurants, but a fair number work at major tourist attractions, such as the Vancouver Art Gallery, Science World, and Burnaby Village. Many of these Tourist attractions have volunteer programs and volunteers can take part.
This is why I think people with disabilities should check the Challenge out, it can be a great benefit, to people on a budget. So many interesting places now cost money to get into, but with the pass, you and a friend can get into these places for free. Offering new ways to expand your horizons’. For example, I would have never thought of going to the Bill Ried gallery on my own, but now it one of my favorite places to visit.
I believe the Tourism Challenge is also a really great incentive for people to both find and stay volunteering. For many their volunteer job is their best chance to actually finding paid work. Either through contacts they make volunteering or because of the work experience they gain.
So here the link:
Those tourist sites that are involved in the 2016 challenge should be out soon. If you’re interested in the Tourism Challenge check out the list of participants that are in your area and give them a call about volunteering. If you’re already volunteering at a tourism site talk to your supervisor about the Challenge and see if they think it’s something that would increase their business. You never know you just might be the one who introduces a whole new benefit for everyone where you work.
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?
A Better Chance of Success?
A few weeks ago I was asked by the Cerebral Palsy Association to come and give a short talk about goal setting, specifically in how setting goals related to finding work. Initially I was taken aback; I’m good at many things but I’m hardly a poster child for finding a regular job. Still wanting to help, I agreed and started to put together an outline of what I was going to say. While doing this, my writing partner and I, hit upon yet another uncomfortable truth regarding disability. That being, in my opinion, at this time, a person with a disability has a better chance of success over the long term becoming an entrepreneur and starting their own business, than trying to find a someone who would hire them.
Why do I think someone with a disability should start their own business? First and foremost, I believe it’s a smart choice because, you the disabled person, are in control of your own destiny; you are not beholding to someone else giving you anything. Second; starting and running your own business can be done on your schedule of when you function best, which is a big advantage over a job where you’re under someone else’s schedule which may or may not work with your body. Third; you can work with who you want not just a random Joe Blow off the street; and finally, there is nothing that says you can’t build a business while looking for a job at the same time. So why not increase your chances of success.
Despite these advantages, many people (a lot of them experts) believe that disabled people can’t or shouldn’t run their own business. To which I simply point to the many disabled people who run (or help run) their own individualized funding, either through a micro-board or CSIL. Those are businesses plain and simple, and are far more complex than a lot of other business opportunities out there. In fact, living with a disability confers many skills (such as advocacy, getting around bureaucracies, communication with those in positions of power, navigating complex systems etc.) that stand them in good stead as business owners.
About the only legitimate caution that many experts (and to be fair many people in general) have regarding starting your own business is; what sort of business? Now if you have an idea for a business that requires the investment of a large amounts of money, I wish you luck. Far be it from me to stand in your way (especially in an article that advocates for you doing exactly what you’re doing). However, there are others business opportunities that do not require an arm and a leg to get started in. One of the first that comes to mind are the various multi-level marking opportunities out there. Now don’t make a face, while there are a lot of scams, there are also a lot legitimate opportunities as well. I know of one young disabled woman who has made several thousand dollars in commissions over the years with her business. Do your research, and don’t drink the cool aid the first meeting in the quest to find the right ‘fit’ for you. The internet can be invaluable in doing this research.
As well, the internet itself can be a source of business opportunities especially for those of a more artistic bend. Despite it leveling off recently there is still a major demand for eBooks of all sorts; and thanks to websites like Amazon and Shakespir independently publishing is surprising easy and free. YouTube can also be a money maker. They’re always looking for content and are willing to pay for it. Not to mention the phenomena of Kickstarter and Patreon as a means of both financing a project and securing long term financial support. As an added bonus to all this the Vancouver Public Library has production facilities available free to produce this content (other public libraries might as well, I just don’t know about them). All that it requires is a lot of hard work.
And there’s the rub of this great idea. It takes A LOT of hard work to start your own business and get it to the point where you are turning a profit. It can also take money and a bit of luck, but hard work is a must. That’s why so many people fail in business, they’re not willing to make themselves uncomfortable; to push themselves hard enough to do the right kind of work to make it. This is why becoming an entrepreneur present such opportunities to people with disabilities. Working hard is just a fact of live for many of us. Doing things that are uncomfortable is just a fact of life for many of us. Because we are used to working hard and doing uncomfortable things, this may be one of the few areas where people with disabilities actually have an advantage over the able bodied, we just need an idea and a means to exploit it.
So there you have it. The reasons why I think people with disabilities should seriously explore becoming a business owner. Is there a high chance of failure? Yes, yes there is. However, there is also a high chance of failure trying to find a job. At least with a business you’re more in control of those chances (and who thinks that people with disabilities don’t need more control in their lives). Thanks to the internet those chances of finding a ‘fit’ between you and a business opportunity that you can exploit on your own time are growing. So check it out, what have you got to lose?
The RDSP: Do You Have Yours?
Even though I can’t make full use out of the Registered Disabilities Saving Plan (RDSP) myself, and thanks to the increase in asset limits within Person with Disability (PWD) benefit has somewhat decreased the need to open the RDSP, I still believe that the Registered Disability Savings Plans is extremely important, and something that everyone who is legible for it should have.
One of the things that I find really amazing regarding the RDSP is how few people with disabilities have opened one. According to the Federal Government there are over a million people eligible to open an RDSP account yet less than a hundred thousand have done so.
To me this is almost criminal. One of the most revolutionary programs to come into being to help people with disabilities and assure that they have a higher quality of life in the future and less than 10% of the population has taken advantage of it.
So here are one important clarification and two reason why everyone with a disability should at least try and open an RDSP account.
Okay let’s deal with the biggest fear in the room for most of you. Having a RDSP will in no way effect your PDW. Contributing to your RDSP will in not way effect your PDW. Other people putting money into your RDSP will in no way effect your PDW. And most importantly when the time comes withdrawing money from the RDSP will IN NO WAY effect your PWD. If you have heard differently from other people (including financial aid workers) they are simply wrong. In fact, the provincial government wants people to open these accounts and offers a cash incentive for disabled people on PWD to do so. Bluntly you can have both RDSP and PWD and the provincial government will be okay with it.
Perhaps the single biggest reason to open an RDSP is the $90,000 of free money from the federal government that is available to people over time. Can only afford to put in a small amount (say $25 a month) into your RDSP? Fine; the government will deposit three time that into your account. Suddenly that $25 a month is $100 a month. Which by the way is as much as a lot of people put into the retirement saving plans.
Can’t afford to put any money into an RDSP account? People who are currently making less than $25,000 will have the government deposit $1,000 into their RDSP accounts every year for twenty years (or until the person with the disability turn 50 whichever comes first). This $1,000 will be deposited even if you put NO MONEY into the account otherwise.
One thing that is often missed is by many in both the financial and disability fields is that when it comes time start spending money from the RDSP no one can tell you what you can and can not spend that money on. It’s your money! Not the government’s, not your service provider’s, not your families, it’s yours. Want to spend it on a trip go ahead. Want to retrofit a house to live in, okay. Want use the money to hire a family member to get you up in the morning that’s okay as well. In a way, the RDSP is true individualized funding, but without the need of settling up your own not for profit business.
Just as importantly, money withdrawn from the RDSP will not negatively impact the potential funding that a person with disabilities can receive from other government agencies including Person with Disability Benefits (I know I am repeating myself but this part is really important). This means you could get say $1,000 a month from your RDSP (or $12,000 a year), not only will you get your full monthly PDW cheque, BUT you will also still be able to earn $9,600 a year without penalty. So go ahead and dream because if you’ve got the monies inside the RDSP you can make it happen.
So if free money from the government, along with what you put into the plan and the growth on both of these sources are fully under your control don’t interest you in opening an RDSP; I’m not sure what will. Is the RDSP easy to set up? Yes and no; its easy to get started, but in order get the RDSP working effectively for you need to put some time and effort into it. You need to talk to a financial professional who can take you through the steps of setting up and using the RDSP to invest in your future. But don’t stop there: Anyone who will be impacted by your financial well being should know about that your opening an RDSP. Plan things out with your support network so when the time is right you will have the funds to make a real impact in your life.
When did Independence Trump Quality of Life?
I remember it clearly, it was during the 90s and the experts insisted that it would be better for me to feed myself than have someone feed me. So thousands of dollars were spent on consultants and equipment to theoretically allow me to eat a meal with my own hands. It was a total disaster: My CP not only made my arm movement slow and awkward but the mental effort of doing the work often physically tired me out.
This was on top of never having a hot meal, never being able to eat foods that I loved because they could not be prepared in such a way as they could fit onto a spoon, and of course the mess that I invariably made trying to get food from the plate to my mouth. Then of course there were the special plates and the plate guards that I always had to take with me when I went out for a meal in a restaurant. All the prep work that went into converting a meal into something I could eat also meant that any positive presentation of the food was lost to me, making meal even less enjoyable. And to top of everything else a staff would have to sit with me while I ate in case I started to choke or cough. Have you ever tried eating when someone is watching and judging your every movement? Let me tell you it’s not fun. Because of this enforced program supposedly toward independence, I lost weight, I was miserable, I did not enjoy eating at all, and my health suffered.
All the while the experts told me I would improve, I had to practise and this would help me grow and become more independent, and wasn’t that a good thing?
In 2000 I moved to a new service provider and I put my foot down. I wanted and needed help to eat period end of story. Well it took a bit but the new staff finally listened and they started to feed me. With that and a few other changes I started to gain back the weight, I felt better, and I started to enjoy meals again. Overall my quality of life improved even though I was less independent.
Which for me begs the question why was everyone so blasted concerned about my independence in the first place?
Looking back, I now believe that the reason that everyone cared about independence more than my quality of life was because factors that go into independence can be charted, and factors that go into quality of life can’t. Why is charting so important? Because it can be graphed, reported on and use to justify all the money being spent to support an individual with a disability, which in turn justifies the expert’s paycheques.
Quality of Life on the other hand isn’t easy to chart. It means talking to the person with the disability and asking open ended questions that the expert can’t guarantee the answers to: like ‘how are you feeling?’. It means a move away from a medical model to something more holistic something less ‘scientific’. It means trusting people with disabilities and their support networks are not squandering the government’s money.
And yes becoming more independent in the basic acts of living, like feeding oneself, can improve one quality of life. But independence has to be subservient to quality of life the. When independence becomes the main goal it is the person with the disability that losses out.
Shorter column this month because I want everyone else to some writing this time.
Every once and a while an issue arises that is pivotal. Where the course of events can change for individuals, groups even nations. One such event was last year’s federal election, where who we were going to be as a people was set down for the next several decades. Another lynch pin, more directly involving people with disabilities is starting right and you can be apart of it. Last June the federal government announced the start of the consultation process that will ultimate lead to a Canadian with Disabilities Act being created. This act will effect every Canadian and disabled Canadians in particular, and right now everyone has an opportunity to get involved.
The first way is by filling out this survey on accessibility and what that mean to you:
I know that links to this survey were in the newsletter but this is important enough to be posted twice.
The second is to participate in one of the in person sessions that will be occurring across Canada over the next few months. Victoria will have one on November 7th and Vancouver’s will be on November 26th. (No idea where but keep posted I’m sure the Selfadvocatenet website will have more information as time goes on).
These thing are Lynch Pin events people: A rare opportunity to have a real impact on how your world and the world of everyone with a disability will be shaped for much of this coming century.
A Gentle Soul
This column is dedicated to Loraine Dunlop another gentle soul who had left selfadvovatenet.com hopefully for bigger and brighter things.
In 2000 I moved to yet another service provider and a hole new part of the city. My goal was to find a situation where I had a core group people in my life that would treat me with some respect. Early on, I lucked out with the new service provider, and I got several staff and a program manager who really believed in hearing their client. But more importantly to me, they were also gentle.
This gentleness was expressed in several different ways. First, there was a gentle attitude. By this I mean they really listened to me and showed sincerity towards me. They also followed through on my decisions, even if they felt that I was making a mistake.
Second, with a gentle touch they confirmed that their presence was healing. This touch could have been as subtle as a touch on the hand, the shoulder, or the back: Or it could have been as great as a hug, when I was feeling down or in real pain.
Third was a gentle look. This showed me their true interest was in me, and what I had to say without judgment. A gentle look told me a lot, and helped calm my fears. It reassured me that they were here, as my support staff, for the right reasons.
Finally, and perhaps most importantly this gentleness expressed was in their voices. A gentle voice is not necessarily a soft voice. Some of my best workers have been and still are very loud people. However, a gentle voice does contain a zeal for life, that loud or soft can not be silenced. At its core, it was this zeal that gave me the strength to heal and improve my life for myself.
All of these, the attitude, the touch, the look, and the voice, all come, in my opinion, from a gentle soul. A soul that itself is healthy and well balanced. I firmly believe that a soul that is not healthy cannot help others to heal. A gentle soul does not need to put up walls or false fronts to protect itself. Instead it is real and says to the world, “This is who I am; warts and all.” This allowed me to know what kind of person I am dealing with and in that knowledge there lay the safety that I needed to change and heal myself.
One Big Ministry
‘United we stand, divided we fall’. ‘A house divided can not stand’. These are but two of the many sayings regarding the dangers of being divided in the face of opposition. Unfortunately, the wisdom of such sayings is clearly evident when it comes to how people with disabilities are treated within this province.
Currently within British Columbia services for people with disabilities is divided between three ministries and one crown corporation. One ministry deals with people with physical disabilities, mental health issues, and disabilities gained in adulthood. Another deals with all children and youth regardless of how the disability was required. The crown cooperation deals with people with development disabilities, while the third ministry along with handling welfare handles everybody’s monthly pensions. This complicated weave of government offices makes it very difficult for advocates to help. Requiring specialization and a siloing approach. This makes it easier for the government (I’m talking any provincial government not just the one currently in power) to control how both information and monies are dispersed to individuals.
The experts will say that such divisions are required because all of those groups have a unique set of issues that require a specialize support set to best deliver care. I just don’t buy it. During the 50+ years I’ve received government services I’ve met many people with many different disabilities. To a person they have all had to deal with issues around isolation, lack of employment/the difficult of getting a job, depression, experts not listening to their needs, financial security, you get the idea. If and when these problems were solved, the solution was almost always customized to the individual either by some amazing staff or the individual and their personal support network.
So if many of the problems faced by the disabled are universal and the solutions are almost all best customized why not pool all of the resources into a single ministry for people with disabilities?
Having one ministry would mean one set of criterial for how and when someone with a disability would get services and how much money s/he would get to provide that support. So if you’re in a wheelchair, how you became disabled (accident, CP, illness etc.,) wouldn’t be an issue for the nature of your support, only that you are in a wheelchair. As well the transition from child to adult would become a lot easier because everything is handled by one ministry and one pool of support money, not two or more as is it currently is. Just imagine if you’re a teen transitioning to an adult, and at least for a while you could have the same case worker and service provider handling your support.
Individualized funding could become more achievable for a greater number of people. With just one procedure to follow everything become streamlined, and easier. Plus, there might be the added benefit of providing enough work that a group of professional advocates to actually earn a living wage while they help people with disabilities and they support networks to have greater freedom. There are some people who do this now, but they’re either volunteers, members of non profits or have to work two or more jobs just to make ends meet. This might have worked in the past, but with Canadian/BC people with Disabilities Acts coming in the next 12 to 24 months, and people starting to use their RDSP to fund their support, the kind and level of assistance needed is going to change and become more complex to navigate properly. People with disabilities deserve to have professional assistance, like they have doctors, and dentists today for their health needs, to help with life planning.
One of the biggest advantages of a single ministry in my opinion, would be to get Person with Disability Benefits away from the welfare office. Instead it could be handled by staff who do not have an inherent distrust of People with Disabilities and with less arbitrary rules meant more for people needing short term help getting back on their feet and instead focusing on providing a basic floor for people and helping them achieve a higher quality of life.
Finally, and no less important, a single ministry would mean the entire disabled community would be united. If cutback occurred we would be of one voice to battle them. Mutual self interest would help self-advocates currently supported by two different ministries to potentially speak with one voice. Not to mention parents and other support networks could be mentored in how the ministry works by people actually in the system, not a group of experts who think they know how things work.
United, we could actually stand on our own.
What I Found Out at the Meeting
On November 26, a friend and I headed down to Canada Place to take part in the Federal Government’s Public Engagement meeting. There with around 300 people, most of whom had a disability, we talked to the Mister of Sport and People with Disabilities about various disability issues.
I learned a lot from the meeting, including a big reminder on just how diverse the disability movement really is. There were a lot of people with vision impairment at the meeting along with quite a few representatives of the deaf community. As well many people from the autism community were there, often contradicting each other when they talked about treatment. A lot of people were from Barrier Free Canada/BC and they were expressing opinions on the actual topic at hand which was supposed to be about the Canadian with Disabilities Act. I say supposed because many of the presenters came with other topics in mind.
This was another thing I got reminded of; how disabilities issues cut across the actual causes of disabilities. Many people from the deaf and blind communities talked about the difficulty of finding gainful employment. Many people on the autism spectrum talked about the need for support or the lack thereof. Substitute being blind or deaf with autism or CP and you’d hardly know the difference. What did a lot these issues have with the Canadian with Disabilities Act? Not a lot, but it really did show, yet again, how people with disabilities haven’t had a voice with the larger community for their issues for a long time. Perhaps more than anything I believed that the overwhelming desire to let people in power know just how much their hurting shows just how important a Federal Ministry of Disabled People really is, and just how overdue it is as well.
As for the meeting, itself, I was disappointed with two things. First off there was no mention by the government of the optional UN protocols to the Un Declaration of Disabled Rights. These protocols allow citizens to bring complaints about violations of disabled rights to the UN. Effectively giving citizens the right to sue their own government for inaction. Canada is one of the few developed countries that has not signed onto these protocols. Now I have it on good back channel authority that Canada will sign the protocols eerily next year, but it would have been nice to have this officially confirmed. As well I was disappointed to hear that we may be well into 2018 before a Canadian with Disabilities Act will be implemented. I know some time is needed work through the regulations but if they’re going to enact the thing as part of the Canada 150 celebrations surely six months is enough time to get the thing working. This isn’t rocket science folks.
But then I have to remember that at least were seeing some movement on this file. Which was far more than we had with the previous government. And that taking a little extra time to get things right is ultimately a good thing. As well hopefully that extra time will provide the Provincial government the kick in the butt it needs to get a provincial BC Person with Disabilities law enacted.
Still; I hate the waiting.
About the Author
I am a middle age woman who like many; has stumbled alone this journey called life: Which is no small feat given that I’m in wheelchair. I’ve always had an interest in society’s larger issues around disabilities and hope that my experiences as a self-advocate can help educate the public in how best to treat others.
Along with my writing I’m actively pursuing a career as a public speaker and educator.
Other books by this author
Please visit your favorite ebook retailer to discover these other book by Cathy Grant
The Continuation of my Journey
Normal is a Strange Word
A Guide to Common Sense: A Disabled Woman’s Perspective
Staff: A Necessary Evil
Connect with Cathy Grant
I really appreciate you reading my book! If you’re interested in talking about me writing for your newsletter or website please get in touch with me at my Facebook page at:
A collection of my 2016 monthly columns from Selfadvoatenet website in British Columbia Canada. The eleven essays (I started writing the column in February of last year) cover a wide variety of issues and locales. Some are personal, some are about issues that anyone with a disability could relate to. Some cover international issues some are local to Canada or British Columbia: I hope I've covered something that may interest you. If anyone would like to reprint one of my columns, or have me writing something more specific please feel free to contact me on Facebook; the link is at the end of the book.