Chairperson's Update: June 2024 | CCD's 48th Annual General Meeting (AGM)

by Heather Walkus, CCD Chairperson

June 2024

Contents
48th Annual General Meeting
Members-at-Large
Executive Committee
Opening Comments
Disabled Peoples’ International Peace Statement 
Appendix 
AGM Presentations
Annual Report

48th Annual General Meeting

CCD’s 48th Annual General Meeting (AGM) took place on Tuesday, June 18, 2024.

Members-at-Large

At the AGM, CCD’s members affirmed our Members-at-Large on Council for 2024-25:
• Ingrid Palmer
• Fran Odette
• Noah Papatsie
• Elliot Dewhirst
• Alan Bridgeman
• Ian Young

Executive Committee

At the meeting, Elliot Dewhirst was elected as CCD’s new 2nd Vice Chair. The whole CCD team thanks Tracy Odell, our out-going 2nd Vice Chair, for her 4 years of service on the CCD Executive Committee.  I am pleased to report that Tracy will be continuing on our Human Resources Committee.

I was affirmed as Chair and Nicole Diakite was affirmed as Treasurer.

The members of the Executive Committee are as follows:
• Heather Walkus, Chairperson
• Ingrid Palmer, 1st Vice Chair
• Elliot Dewhirst, 2nd Vice Chair
• Ian Young, Secretary
• Nicole Diakite, Treasurer
• Fran Odette, Member-at-Large

Below you will find the opening comments from the AGM.

Opening Comments

Hi everyone. It is my Honour to welcome you all to our 48th AGM of the Council of Canadians with Disabilities.
This year, I wanted to open our meeting by shining light towards and recognizing all those who have been made disabled, been harmed, killed and have died from violence, genocide or pushed, because of the lack of services and proper supports, and not because of their disability, to choose MAiD.

At a conference several of us attended a few weeks ago in Montreal, Elder Mary Lee from Nunavut lit the Quillig. She spoke about the materials used that supported the Quillig to give heat and some material like arctic cotton to give light and learning how to work with those natural materials and knowing when to add more when you needed more light or heat. Sitting beside her, learning about lighting the Quillig was her 3 year old daughter and following what her mother was doing, lit her own Quillig and tended to its fire. Learning respect and skill by doing and not being afraid of the fire and by given the respect by her mother of being a whole person who wanted to learn. Mary Lee said that children in the arctic are very fortunate because they learn to play with fire and understand its power.
She spoke about leadership and what that means in the Inuit world view. Leadership is looking after those around you. All of the people, not just a few. So with Mary Lee’s teachings about leadership and recognizing the harm being done daily, and strengthening our resolve and commitment of all of us, I am reading out the following statement from Disabled Peoples’ International that CCD assisted in writing in 1982. It was presented at Hiroshima Peace Memorial Park.

Disabled Peoples’ International - Peace Statement

“Disabled people all over the world know from their deepest personal experience, the capacity of war to cast its mantle of death and destruction over life and limb. The ability of modern weapons of war to devastate a people, to sear human memory with permanent scars of personal tragedy, to shatter the dreams and hopes of children, to maim and injure, is nowhere more eloquently proclaimed than here, the Peace Memorial Park in Hiroshima.

Every day the absolute sanctity of human life is asserted by the aspirations of this planet's 500 million disabled people. The creation of disability and the ending of life by the waging of war and genocide is an abomination. Yet the accumulation of the engines of war gains pace.

The talents of human kind are turned from the satisfaction of people's needs to the invention of more and more horrific devices of destruction.

The products of human labors, wrested from the earth with all the ingenuity of generations of men and women, are dissipated in gigantic stockpiles of armaments which are of benefit to no one. The power of cooperation amongst individuals and the organizing capability of the human race are squandered in the creation of gigantic war complexes whose sole intent is the destruction of people.

HOW LONG CAN THIS OBSCENITY CONTINUE?

We, the representatives of the world's disabled people, have come to Hiroshima to make known our resolute condemnation of the arms race. We affirm, in the strongest terms, our determination to join with others and take our rightful place in the forefront of the worldwide movement for disarmament.

Disabled Peoples' International says:

LET ALL OF US JOIN TOGETHER IN A WORLDWIDE MOVEMENT FOR PEACE.

LET US CALL FOR ALL NATIONS' ECONOMIES TO BE TRANSFORMED FROM WAR ECONOMIES TO PEACE ECONOMIES.

LET US INSIST THAT THE $600 BILLION NOW SPENT ON ARMAMENTS IS DIVERTED TO SOCIALLY USEFUL PROJECTS.

LET US DEMAND THAT THE WORLD LEADERS NOW, IN THIS MOMENTOUS EPOCH, WHERE WE HAVE THE POWER TO DESTROY AND CRIPPLE, BEGIN THE ENORMOUS TASK OF REDIRECTING OUR RESOURCES, OUR PRODUCTIONS, OUR TALENTS AND OUR ABILITIES FROM THE CREATION OF THE WEAPONS OF WAR TO THE CREATION OF INSTRUMENTS OF LIFE.

The Disabled Peoples' International calls on all people to affirm this movement.

(Disabled Peoples' International, Peace Memorial Park, Hiroshima, Japan, June 24, 1982.)

Reaffirmed at the Disabled Peoples’ International meeting at Sapporo Japan in October 2002

With the following words.

As disabled people we are opposed to wars, genocide, violence and all forms of oppression.

Daily, men, women and children are being disabled by land and personnel mines, and forms of armed destruction and torture.

We must work for a world where all people can live in peace and express their diversity and their desires.”

I ask us all to take a moment of silence to recognize those of us who have been harmed and those who have passed that we know and those that we do not know and acknowledging their and our humanity.

Let us take the energy from these deep feelings and as people committed to peace, reaffirm again, in our organization’s 48th year, and honour the knowledge of light and warmth that Mary Lee’s daughter is learning and send out that light and warmth and love in honoring of all people, worldwide. CCD is the voice of our own. We are us and while we may not come from privilege, our work gives us entry to privileged seats at privileged tables and we must continue our resolve.

So let us on this 18th day of June 2024, come together and sitting around the fire, bring out the best we have to offer each other and the world.  Let us honour the incredible commitment we have made and the powerful work the next three thought leaders are doing.  

Following the opening, we heard from Nancy Reid (Coalition of Persons with Disabilities NL), Rohini Peris (Environmental Health Association of Canada), Rabia Khedr (Disability Without Poverty), who shared information about social just work that their organizations are undertaking. Summaries of their presentations are in the Appendix.  Please click on the following links to learn more about their organizations:

When you have time you can check out CCD’s Annual Report to review the highlights of the work done during 2023 – 2024 by the Executive Committee, the Social Policy Portfolio, International Portfolio, Transportation Team, Human Resources Committee and Technology Committee. 

Stay tuned as we continue to implement our five year business plan that has been adopted by the Council.  We are on the Road to Fifty and our business plan is preparing us for the challenges of the next fifty years.

Heather Walkus on behalf of the CCD Team.

Appendix

AGM Presentations

Summary of Presentation by Nancy Reid (Coalition of Persons with Disabilities NL)

As is similar for many of you throughout the country, for all of you, I'm sure, we have been experiencing barriers to access.  Sometimes those barriers are physical. Most often though, they are attitudinal and systemic. In recent months the Coalition has taken some steps to remove barriers and provide opportunities for people with disabilities to have better knowledge, choice and power. I certainly don't want to create any illusion that we've figured out how to change the world. We have simply decided that we will take action to make some positive change right here at home.

In October of this year, many, in the community in Newfoundland and Labrador were dismayed when we witnessed amendments to our provincial Newfoundland Labrador Buildings Accessibility Act that purposely created loopholes that continue to enable public buildings to be physically inaccessible to persons with disabilities in our province.
In addition, the amendments that were passed include a change to the definition of persons with disabilities and that change failed to include persons with disabilities identifying with or identifying with disabilities beyond physical, vision and hearing.

It's really difficult to grasp how that's possible today. And it's more incredible when you understand that the appropriate recommendations to amend this act were actually in the hands of government. In fact, the department had requested its own building accessibility advisory board to propose amendments to the Act that would address outstanding issues. This advisory board that was created by government and made up of persons with disabilities, disability advocates and members of the building and business communities put forward a number of solid recommendations. These recommendations were further applauded and officially supported by other groups, including the provincial advisory council for the inclusion of persons with disabilities of which I was a member.
Further to that a series of public forums was held to request the general public and any stakeholders take the opportunity to contribute their thoughts and their concerns. At the end of all of that process, the department responsible presented what we heard document online. And it outlined the overwhelming support by respondents to the recommendations made by this building accessibility advisory board.

And so when the amendments were tabled in the House of Assembly in October none of those recommendations were included as proposed. Other recommendations were included as directed by the solicitors, by their legal team. And the board was publicly thanked for their diligence and professionalism. It really took the air out of the room.

After the 1st reading in the House, I wrote an email to the minister responsible and asked her to pause the process so that we could all sit down together before the changes were made. Several of us in the community provided background understanding and offered questions to the opposition parties to voice their concerns during question period and second reading. All to no avail. To those who had only heard a blurb on the evening news, the presentation sounded like the government was actually making a positive change and that they were crediting the community for their contribution. The truth was far off. After the 3rd reading in the house, the amendments received royal assent. And now we have an act that permits existing inaccessible public buildings to maintain that status indefinitely. It also includes an outdated definition of persons with disabilities that provides opportunities for many people with disabilities to be negatively impacted because they're very identity is not recognized or valued after the legislation. It's been a really difficult year for champions of access and inclusion in Newfoundland and Labrador. We continue to express our concerns through letter writing and at meetings. And it's been really challenging.
In our response, we've decided to change things up a little bit at the Coalition. Each year, in recognition of international day of persons with disabilities in December, the Coalition is traditionally publicly with the minister responsible for the status of persons with disabilities signing a proclamation for that day. In early November, I told my board that I would not do that this year. I told them that I would not sit and add to the illusion that this government has any concern for the status of persons with disabilities. My board quickly agreed with my stance and we've formulated our response. And instead of a proclamation, we held a public event and invited all media and they came.

We spoke the truth. In plain language, I explained the opportunity missed by the amendments.  I spoke to the obvious intention that government displayed in attempting to portray these amendments as being backed by the advisory board of the community at large. We filled the room with folks from the broad disability community and put the government on notice that we are the community of persons with disabilities and that we are not going anywhere. We participated in several follow-up media places. Of course, nothing significant has changed with legislation or the way government is treating our community.

But I see a difference in how there's a slow moving, yet growing community of people who are refusing to be silent and are coming together to demonstrate that value.

We did a little more and in January there was a high profile by-election in a riding close to the capital city. The Coalition invited all 4 candidates to a public question and answer period on disability related topics on the agenda. All 4 quickly responded and agreed to participate. This is the 1st time that this has happened with disability related questions specifically for our province. We filled all of the seats in that room and actually had to bring in more seats. People responded. The media responded. And for us it was a chance to get perspectives of the candidates on important specific disability related issues. But it was also a chance to put the individuals and their respective parties on watch. To understand that our community is large, that it's present and that we can make a real difference when we choose to come together. We put them in a space where they had to recognize that there is a community of people in this province who are coming together and are going to stand firm and stand tall and say we will not be denied. So I'm seeing a growth of that.

I would like to tell you a little about another thing that we're doing to respond to people in our province right now. We see barriers that are present for people with disabilities and also for seniors who may or may not identify with disability, themselves. Often folks need support to help them maintain autonomy and the ability to live in their homes. We hear that all over the country. We also know that people want to help, but that we live in a time when for many reasons helping has become difficult. We purposely set out to respond to some of the needs we see and create a process to remove barriers. At the coalition, we are attempting to create an efficient ecosystem of caring and kindness through a program that we're calling kind share. It is a digital volunteering service that uses a web app and will eventually use mobile apps to facilitate acts of kindness and volunteerism to support persons with disabilities and seniors in our community. It's a barrier removal. So basically the way it works is that an individual can sign up as either a beneficiary as a person with disability or as a person who is a senior or as a volunteer.  Either way you will receive training and a virtual interview to ensure you understand what to expect from the program. Volunteers will also be subjected to a secure record check all through the process. We will absorb all costs associated with that. After the sign-up process, as a beneficiary you can post a task in this app for something that you need help with. And there are a number of different tasks that we've identified. Right now it's things like snow shoveling, food donation, some minor household maintenance, a free ride, those types of things. Volunteers will see the task posted in the app either through an email or just through the app itself. They will respond to tasks according to the task type or to the geographic location.

We think of it as Uber for volunteerism. Folks can volunteer as much or as little as they want simply based on their availability and their location. We're really trying to merge altruism and technology in a way that serves the community better. I think there's real opportunity and possibility here. Right now, we're fine tuning it, the minimum viable product, if you will. We're on the cusp of launching it as an official test pilot. We're really considering safety and accessibility as the key parameters. We're communicating and working with several partners with various disability backgrounds, including vision loss, intellectual disabilities, autism as well as with some of our senior populations and associations in that group.

We are really trying to figure out how this app can be used, and the technology can be used for all people. It's about barrier removal in every way. It's going to be available for screen readers and also factor in that we can create proxy accounts. So if a person doesn't use technology for any reason, we can assign a proxy.
We're really looking for feedback from the community right now, the community of users. We want to develop a tool that makes sense, removes barriers and provides opportunity for people to live autonomously and safely a little longer in their own homes. We think that it's responding to some of the needs that we're seeing. Of course, it can't do everything, but we really see this as being something important to our community right now. We hope that in a few months we're going to roll it out into a greater test pilot and once we get there we want to go provincial with our phone apps.

 
Summary of Presentation by Rohini Peris, Environmental Health Association of Canada

Today about our work and about the disability that we work for. Multiple chemical sensitivity. Our group, the Quebec group was started 20 years ago. We came from a place of five people in a park, because we couldn't be in the built environment because of the chemicals present. Those 5 people have now been reduced to two. They're either not here on this planet anymore or they're just too sick to function. The group has hung on for these 20 years, reaching new heights because friends like all of you and especially Heather and April. Thank you. You know, we have hung on while all the other groups, similar groups across Canada, have shut down because basically it was sick people working for people with this disability. And it didn't work out. So hopefully, we can continue and we started the Canada group two years ago because we needed to have a national reach. We were already working across Canada even though we were a Quebec based group because the need was so much and we were not going to turn anyone away.

Before I continue, I would like to share data of the prevalence of multiple chemical sensitivity in Canada. Data on MCS has been collected by Stats Can at certain cycles from 2000 to 2022. And in the 16 year period, that is until 2016, the number of diagnosed cases more than doubled to just over a million. And have increased to over 1.13 million by 2020. We don't use the data from 21 and 22 due to COVID and because of a glitch in their system. From this number over 72% are women and close to 50% are over the age of 55.
The territories show a higher prevalence of MCS than the provinces.

So what is MCS?

Some of you may have heard about multiple chemical sensitivity. Every time I attend a meeting, I talk about this condition.

So the condition is triggered by exposures to chemicals found in your everyday products on your shelves. The resulting sensitization of certain receptors leads to symptoms and on re-exposure to these chemicals photo centralisation occurs which leads to a higher number and intensity of sensitivity to an increasing number of chemicals.

There are 21 peer reviewed studies showing receptor sensitization of these receptors in people with multiple chemical sensitivity and also there are 16 animal model studies showing sensitization.
So symptoms can be numerous in many systems of the body and most often include brain fog or loss of cognitive function, lack of concentration, fatigue, breathing issues including asthma and other respiratory symptoms. Also affected are the eyes, throat, ears, heart, the muscles and joints, in other words, all systems of the body can be affected.

Unless accommodations are provided the person who comes down with chemical sensitivity, spirals downwards due to a lack of access to employment, healthcare, community. This often leads to exclusion, isolation, stigmatization, poverty, sometimes homelessness.

And they now can find relief in Medical Assistance in Dying (MAiD). You all must have heard about Sophia who was given MAiD in 2022. We now have a number of people in line waiting for MAiD.

People with MCS often report to us that there is no place for them on this planet. So for something for a condition that sounds so complex, how can we simplify and provide a solution for inclusion? What does accommodation look like and depend on? And I would say that it depends on 2 words and that is product choice. It's important to choose products free of scents, fragrances, perfumes. They are the least toxic and with the lowest emission. Be careful of greenwashing, which is the appearance of environmental responsibility. Some products which claim to be sent free, all they do is mask the smell of the perfumes by using masking agents. So people with MCS will still react to them since they are reacting to the chemicals contained in the product. And this leads to further stigma and bias, as people think they have provided an accommodation to the individual. So it's important to always read labels since the manufacturer can change the product composition without notice on the label.

Another reason to choose wisely is that it does not mean when a product is on the shelf that it is safe. For many of the products they do not have to label whether they are carcinogenic, mutagenic or hormone disruptors, etc.

We have been reaching out to Health Canada about transparency in labeling for solutions in product choices and how to make that change.

Please visit our eco living guide. There's a lot of information on the number of products and ways to identify a product. It's not enough to know product names. You have to learn how to identify a product. In November, 2022, the ECRA project was started to educate and create awareness of multiple chemical sensitivities across Canada. The project has many important partners, one of which is the Council of Canadians with Disabilities and we thank them for their support and participation. The other partners include the disciplines of law, disability, medicine, environment, Indigenous and the private sector.

In this project, we held several focus groups to find out what was the community going through. And basically the entire project was built on need and addressing those needs.

Here are a few of the main themes. Environmental triggers such as scents and chemicals pose a major challenge for individuals living with MCS, which is the acronym for multiple chemical sensitivity. Grocery stores and pharmacies are particularly challenging due to overpowering scents and cleaning chemicals.

Even simple activities can become overwhelming due to constant exposure. Stigma and discrimination are largely due to a lack of understanding and awareness.

Maintaining employment or post-secondary education is challenging due to environmental triggers and barriers to accommodations. Workplace accommodations and increased awareness are needed to ensure equitable opportunities.

Finding suitable housing is a monumental challenge often resulting in homelessness or living in unhealthy conditions.

Requests for accommodations frequently result in abuse, harassment and discrimination. And just by way we have witnessed this with people over 60, 65 where they are too afraid to report.

They're afraid of what might happen if they reported that. All they asked was to be informed when laundry would be done or could somebody change their products so that they could breathe.

There is a significant financial burden living with MCS, which is made worse due to unemployment and poverty. It is expensive to live with this disability. Why is this? While there's no access to employment because of lack of accessibility and people lose employment and therefore their income while they are sick and unable to stand up for themselves. They have to do that and fight for whatever income replacement they can get. It is during this time that they're under great stress and they realize the costs of organic items, organic food, masks.

Poverty is quite rampant in our community because of the disability.

In this project we focused on human rights to teach people their rights. So they can take the content we have developed for accommodation, how to ask for accommodation, and then exercise their rights when they are disrespected. We offer workshops and accessibility to learn the updated science, human rights and accommodation measures and how to successfully implement them. To date, we have completed 91 workshops and reached out to over 5,000 people including all the human rights commissions across Canada, the law societies. We've gone to the medical association, civil society, to government agencies, the general public, and, of course, to people with multiple chemical sensitivity, teaching them on how they can take back their power using all the tools that we have built on our website. Through the project, we have also built many partnerships and reached at least a thousand groups, including universities and disability groups. We've measured the impact of the work and all the work through surveys and polls. Our social media is very active. In this period we have reached a close to 5 million people. We've produced 79 bilingual videos on accommodation. There is one very important 21 minute video on what is MCS? And this video especially has helped make changes for inclusion. Members have been reporting to us that they've been able to get accommodation much easier because of the video.

Last Friday June 14th we received the butterfly effect award for our work from COPHAN. .We accepted this on behalf of everyone disabled with multiple chemical sensitivity in the hope for inclusion, equity and accessibility for this condition.

Thank you.
 

Summary of Presentation by Rabia Khedr, Disability Without Poverty

Disability Without Poverty like every other group, organization and person with a disability in this country was awaiting the arrival of the budget and hoping for a good one. We were sorely disappointed. We have turned a leaf in terms of our out facing communication and we are being very crystal clear in the media that this is not adequate. We are not happy. Our expectations were raised sky-high and they dropped us like a hot potato because maybe as disabled people we are not that important as voters. So no more mincing words, no more being the nice guy, no more being a pawn in party politics. We have always spoken truth to power. And we are boldly speaking truth to power now.

We are launching our better the benefit campaign. We recognize the Canada Disability Benefit law is a step towards systems change. It's historic. The Canada Disability Benefit being budgeted is a step in the right direction, but it is not what we were promised. It's not the systems change. that we were all promised that would lift disabled people out of poverty.

So the government has managed to honor the letter of the law but not the intent of the law and we're being very clear in our media statements that we are very, very disappointed that we were let down in fact as disabled people in this country and everybody that mobilized and advocated for this benefit.

So Disability Without Poverty (DWP) has been laser focused on the Canada Disability Benefit for 4 years now. We're coming up to 4 years of pushing really hard to see this through.

DWP, itself, is, an entity unto itself now. We've reached a big milestone we have Charitable Status. We are not funded by government. We do not take government dollars for the work that we do. We are funded by philanthropy, by private and public foundations.

We have a team in Ontario. We have connections in Quebec, on the East Coast, in Alberta, in British Columbia.

We had our legislative day in Ontario because now we're shifting focus from the feds. We are engaging province by province to push our provincial governments to ask their federal counterparts to improve the benefit and to cut red tape. So if people have already been vetted by one level of government, the other level of government needs to honor that.

Disabled people are going to have to, if they're not already. get onto the DTC and then apply for the Canada Disability Benefit.

These are two very important things that we're working on.

We're going to push hard for the federal government to accept people who are provincially enrolled.

I know that the NDP introduced a bill last week, but where were they when it came to the supply and confidence agreement? Why wasn't the Canada Disability Benefit a part of that?

We want to get money to the people who need it most.

We know the bigger picture numbers. We know what the gaps are for people across the country.

We know that the government can do better and should do better.

We had our legislative day in Ontario. We are having activities throughout the summer. So I will be going to Nova Scotia.

I will be meeting, hopefully with the mayor of Halifax because social services costs are downloaded to municipalities. So, municipalities also need to be involved in pushing the bar with the feds.

We will be in British Columbia. We will be having an event in Vancouver.

The goal is to be out there in the provinces to actually connect with grassroots individuals, people with disabilities living in poverty, to get them involved and connected and conversing with their elected officials.

We will also be holding a community event in Edmonton and in Calgary in August.

We are on track. We are going to build out. We will be tracking who is on board with no claw backs.

We will be preparing a response to the draft regulations which we're anticipating will be tabled. They will be open for comment. The feds want to give as much time as possible to ensure that people have the opportunity, disabled people, have all the time in the world that they need to give feedback to the regulations. I think we're ready to respond, but they think more time is going to help us respond. They just need more time on their end is what I think personally. There is a meeting next week that we will be attending that we got invited to where they will be talking about the regulations and the process for giving input.

There's a lot of work to be done and we need to all do it together. Just because we mobilize and make some noise once doesn't mean that they keep paying attention We need to keep making noise, keep knocking on their doors, keep reminding them that disability poverty is real in this country, a country that that values itself as one of the best places to live, to thrive. It really does not take care of its most vulnerable members. So, keeping the pressure on, it is an election year, so we also need to strategize around that for 2025, engage with the leading contenders for the next government and get them committing to increasing the Canada Disability Benefit and addressing all the barriers that we're identifying in their platform. So we need platform commitments around the Canada Disability Benefit out of all parties for next year's election and that work has to begin now.

Heather thanked the presenters.

CCD Annual Report

Click on the following link for the 2023 - 2024 Annual Report.