Response from Min Khera — rcvd 27 Sept, ‘23
1) I received the following response, in the form of a pdf letter, to my initial email to Minister Khera, which was sent in early August, on 27 Sep, ‘23.
2) My response, sent today, to both the contents and more specific concerns that have been raised by the online PWD community follows.
By email: chorus.masters@gmail.com
Dear [redacted legal name]:
I am responding to your email of August 2, 2023, in which you generously shared your experiences as a person with a disability and offered valuable suggestions for enhancing communication with the disability community online. I sincerely apologize for the delay in getting back to you.
I want to express my heartfelt gratitude for not only taking the time to reach out to me but, more importantly, for sharing your personal journey. Your story holds immense significance, and it has resonated deeply with me and no doubt with countless other Canadians. Rest assured that I bring not only your story but the many other stories I have been privileged to hear from Canadians with disabilities with me every day in my role as Minister for Diversity Inclusion and Persons with Disabilities. Moreover, it is a reminder of the importance of getting the Canada Disability Benefit up and running as soon as possible.
At the core of our efforts lies a commitment to listen to the voices and lived experiences of Canadians with disabilities, a commitment embodied in the principle of "Nothing About Us, Without Us." I firmly believe that this approach not only results in improved programs and policies but also played a pivotal role in garnering unanimous parliamentary support for significant legislative bills such as the Accessible Canada Act in 2019 and the framework legislation for the Canada Disability Benefit from this past spring.
As we work towards delivering the benefit, upholding to this approach remains essential to ensuring its successful design and implementation. Since being appointed, I have been meeting with various organizations and persons with disabilities to listen to their concerns and priorities. I will continue to have more of these consultations on a regular basis to ensure that the diverse perspectives and needs of persons with disabilities are reflected in the construction of the Benefit and around the Cabinet table.
I am aware that you and many other Canadians with disabilities want to stay informed about the latest developments, especially as we are currently consulting the community on the regulations for the Benefit. I'm pleased to inform you that since receiving your letter, I have instructed my team to incorporate some of your valuable suggestions regarding the best ways to engage with individuals with disabilities online. As a result, we have been using the #PWD and #Disability tags. My team is also in the process of planning regular online updates to keep you and the disability community informed about the latest developments and engagement opportunities, as well as to gather your feedback. I understand the significance of the Benefit for the disability community, and I want to reaffirm to you my commitment to keeping the community well-informed.
I want to reassure you that my top priority in this new role is to advance the Canada Disability Benefit as quickly as possible without sacrificing the quality of the consultations or the benefit itself. We know that many Canadians with disabilities like you need the additional financial support that the benefit will provide. That is why we started the regulatory development process quickly after the Canada Disability Benefit Act received Royal Assent on June 22, 2023. In parallel, I am engaging in discussions with my provincial and territorial counterparts to ensure that every Canadian who is eligible for the Benefit, regardless of their place of residence, is better off.
More information on the regulatory engagement process, and how to get involved, will be available at www.canada.ca/en/employment-social-development/programs/disabilities-benefits.html.
As well, I have asked that your email address be added to the distribution list for Canada Disability Benefit-related matters.
Please accept my best wishes.
Yours sincerely,
The Honourable Kamal Khera, P.C., M.P.
Minister of Diversity, Inclusion and Persons with Disabilities
2/2
Greetings Jasmeen,
I intentionally waited a few weeks before sitting down to respond to the letter you included. I did so for two main reasons: 1) I needed to wait until my negative reactions to it had subsided, and 2) I wanted to wait and see whether I would receive any email from the referenced "email list" for PWD stakeholders. While my reactions have become less intense, I have yet to see any results from the second point.
First, please thank Min Khera for penning her letter to me. It means more than you could know to have a Cabinet Minister actually take the time to respond in such a thoughtful manner. At this point, I have to consider even the smallest of interactions as successes.
That said, I have a number of concerns with the content of the letter.
In order to illustrate my point, I ask you to do the following: Imagine that you, a racialized Canadian, have only NGOs, publicly recognized "experts", and famous persons that share your culture or hereditary nation speaking for you, rather than having our governments ask to speak to you about your concerns and experiences.
What happens when these representatives speak in generalities that don't represent your experiences?
What happens when these representatives rely on statistics, studies, and "established methodology" to provide them with actionable data, rather than looking past the aggregate data to discover the outliers?
What happens when these representatives give every appearance of colluding with each other in order to present a "unified front" that is not representative of the experiences of yourself and those you know?
How would you feel in response to these things? Would you sit by and let "representatives" misrepresent the lived experience of yourself and those you know? I must doubt that you, or Min Khera, would. I have to hope that you would insist that your voice be heard.
THAT is the experience of hundreds of thousands of PWD that I know. We are not represented—adequately, or at all—by the Rick Hansens, Marlee Matlins, Inclusion Canadas, and other NGOs operating in the PWD space. Why?
Rick Hansen, and other NGOs like his, tend to focus on "education" rather than action. Their fundraising very rarely results in direct measurable positive results for the communities they represent. When was the last time you heard Rick Hansen's org providing mobility aids directly to their community, or the CNIB offering a prescription glasses program to the impoverished, or Inclusion Canada offering—or advocating for—grants for those they purport to represent?
As a result of their focus, we have dozens (hundreds possibly?) of NGOs that operate as glorified think-tanks, occasionally producing well-crafted and visually pleasing reports, and aggregating the "results" of other NGOs in the PWD space, repackaging it, and presenting it as "summaries" (Disability Without Poverty is a prime example of this).
While PWD on the streets continue to languish in poverty and non-inclusion, we have these NGOs misrepresenting what they actually do, while assuring us that they are working for our interests.
The phrase "Nothing about us, without us" means very little when it is not acted on in a meaningful way. PWD are not the NGOs that claim to represent us; rather, the NGOs only exist because of PWD. Min Khera's continued reliance on these NGOs to be the most effective way to help PWD is exactly the reverse of how it should be. Average Canadian PWD must be centered in discussions about benefits, programs, and discussions about us.
Your office is losing the faith of Average Canadian PWD. What we see, through press releases, sporadic updates, and confusing activity on social media is a continuation of the horrid treatment we received under the former Minister. Min Qualtrough was deeply distrusted by the PWD community because of her actions in response to us. Right now, the only major difference we see in Min Khera is we aren't being blocked on social media for disagreeing with how our needs are being communicated by her office. That's not much of a difference. We continue to feel unheard, discarded, and of zero importance about an upcoming benefit designed for us.
At best, Canadian PWD have another 20 months (June 2025) to wait for any financial assistance. We had to witness, often from the sidelines, while the atrocity that was Bill C-22 made its way through Parliament. This was after three full years of waiting since PM Trudeau promised that PWD interests were first and foremost in his party's intentions. We find it impossible to accept that "additional study" needs to be done when the former Minister had PWD included in her many portfolios for the entirety of her being a Cabinet Minister; by the time she was moved, she had been the "representative" for PWD for eight years. By the time the CDB is actually realized, PWD will have waited an entire decade for relief from the unending poverty that many of us experience.
How would you or Min Khera feel if all you heard for an entire decade was "promises" that aid would be realized? Would your trust in the governments be the same in year 10 as it had been in the 1st year? Or, would you eventually feel like this had been an empty battle, filled with empty promises, likely ending with a severely reduced benefit? I think both you and I know the answer(s).
We are dying by the thousands every year. MAiD track 2 will just increase our deaths. While we become homeless, have no access to treatment(s), and eventually die from neglect, we see our governments applauding their own efforts in finally realizing that we are dying.
How is this "progressive"? How does this empower PWD? How can we be expected to trust that this Minister will be more empathetic to our pleas?
When our communication began, I was very clear that I would not burden your office with the emotional baggage of life under the former Minister. That remains true. However, I can't help but wonder if there is a lack of awareness of exactly how much damage has been done to the Canadian PWD community at the same time that we were being assured "Nothing about us, without us."
I am tired. I am back in despondency. I am deeply distrustful, again. What Hope I have, I hold close to my heart, as letting it be expressed opens the door for yet more disappointment.
It is past time for "pretty words of assurance" that are perceived—regardless of their intent—as a means of pacifying PWD. We cannot be pacified as we are not infants. We cannot be quieted as we have fought too long and hard to finally have our voices heard. We cannot be expected to trust the various NGOs because they have rarely been voices for our actual needs. We, individual Canadian PWD, must be centered in conversations about us. We don't particularly care how difficult that would be; it is your office's responsibility to make that happen. Any grade 10 student can craft an intensive online survey in about two hours. There are no excuses for continuing to rely on NGOs to speak for us in 2023.
In closing, I hold out a faint hope that Min Khera will conduct this important work differently from her predecessor. I hold zero expectations in the "advice" given you by NGOs and other stakeholders that are not individual Canadian PWD. I must also admit considerable reservations that anything substantive and actionable will happen any time soon. Why? Min Khera's continued inability to even consider a DERB (Disability Emergency Relief Benefit) in response to many calls for the same from the actual PWD community and our dwindling number of allies in Parliament shows us that she is not aware of the depth of our pain. Words are meaningless without action to back them up. While I, and those like me, continue to rally support as individual PWD advocates, I can barely trust that Min Khera will catch up to a race that has been running for decades.
We PWD have been living on borrowed time for far too long.
I sincerely hope that any response to this will be made in a timely manner. We PWD are watching...and waiting. Please don't disappoint us again.
Very best,
C. Daley
