I present this Witness Brief in the hope that adding my voice to the many that have already appeared before the Senate SOCI committee will provide much needed context to your continued deliberations regarding Bill C-22 : Canada Disability Benefit (CDB) that is now before your committee.

I have closely followed the progress of the CDB–dating back to its initial genesis in 2015–through its stalled introduction in 2021 as Bill C-35, progress through “the Other Place” (aka Parliament), 1st and 2nd readings and ensuing discussions in the Senate, and, now your Committee’s recorded sessions. However, in the two years of active discussion about the CDB, I have yet to observe a single witness provide public testimony to committee(s)—outside of written submissions—resulting from the lived experience of those Persons with Disabilities (PWD) that exist in abject poverty, unable to access the most basic needs for survival, depending on #MutualAid through social media, and seriously considering MAiD as our only viable option to escape the unending desolation of our lives. The considerable number of directors, spokespersons for national NGOs, and other representatives do not, cannot, speak to our experience because they have been granted the privilege of crafting this Bill from its onset. However valuable their input has been throughout the drafting and review process, said input is of little value to general PWD if we are unable to witness it through the public committee lens. They are, regardless of their PWD status, professionals speaking with all the privileges that implies. “Nothing about us, without us…” loses value exponentially if the perception in the wider PWD community is that some input is valued more highly.

I intend to present you with my lived experience as a PWD without any of those privileges, without representation from a single NGO (there are none that meet my needs), without the privileges of “professional experience”. I invite you to give my words the same weight that you’ve given previous public witnesses.

EMPLOYMENT SUMMARY

Before I detail my lived experience as a PWD, I feel it imperative to provide you with a summary of my work experience prior to formal diagnoses. I do this for two reasons: 1) to counteract the belief that PWD “don’t want to work”, and 2) to illustrate the skill sets I’ve developed.

I began working shortly after my 12th birthday with a paper route in late 1977. My “formal” work began in the late autumn of 1979 - once I had turned 14. Throughout highschool, I worked a minimum of 25 hours / week, while maintaining an A- average, studying several music instruments, and participating in weekly church activities. I would have worked more, but I was not allowed to work on Sundays. From highschool graduation in 1984 through my PWD diagnosis in 1993, I worked a minimum of 60 hours / week, generally one full- and one part- time job. The last three years of that period, I worked an average of 80 hours per week, except for a six month stretch when I was the primary caregiver for my (at the time) partner who was undergoing treatment for Hodgkin’s Lymphoma; I only maintained my primary full-time job.

In those 15 years of employment, I worked the equivalent of a single full-time job for 25-30 years. Simply put, not “wanting” to work was not and is not an issue.

In addition, I had a brief return to work from Spring 2004 - Autumn 2005 in an attempt to withdraw from the CPP (Disability) program.

During my employment, I’ve worked in the following occupations:

Service Industry: from fry cook to prep cook; all “front end” positions from busser to Assistant Manager, alcohol service, scheduling, bookkeeping, and marketing.
Clerical: filing, campaign design, marketing, website management.
Financial: internal accounting support for a multinational accounting firm and a major urban School Board; 4 years with ScotiaBank in their data center in primary clearing, special items processing, interbank clearing, exceptions processing in a variety of roles; over a decade bookkeeping and preparing taxes for individuals and small businesses.
Tourism: wholesale tour sales and creation, housekeeping, night audit, front desk.
Customer Service: inbound sales and modification of reservations for a multinational car rental agency; cold-call sales; out-bound responding to complaints.

I hope you would agree that my skill-set(s) is not indicative of someone unqualified to find gainful employment. Neither my desire nor my skills have been an impediment to working. On the contrary, it is the near impossibility of matching my skills and desire to an environment that fully accommodates my needs as a PWD.

PWD LIVED EXPERIENCE

Firstly, I will not be disclosing specifics surrounding the factors that led to my diagnoses. Suffice it to say they were long-term, traumatic, and life changing; several qualified medical doctors have verified my claims and confirmed the resulting diagnoses over the years. CPP-D qualified me in 1993 and continues to do so presently.

The ongoing conditions that contribute to my PWD experience include: Dissociative Identity Disorder (1993); Generalized Anxiety, Dysthymia with Acute Depressive Episodes, Seizure Disorder NOS (all 2005); lifelong migraines and cluster headaches from childhood onward; Fibromyalgia (Arthritis Society) (2006). I take daily medications to treat the symptoms of all except DID and Fibromyalgia; there are none for the former, while the latter requires complex pain management. Over the past three decades I have been prescribed a variety of SSRIs, anti-anxiety, mild sedative, and migraine prophylactic medications, in addition to undergoing CAT / MRI scans, EEG, and ECG (for a pericarditis incident in 1985 that resulted in heart failure).

I’ve recently discovered that I have a family history of clinical Depression, temporoparietal impairment (Heart & Stroke), and dementia, in addition to past knowledge surrounding cancer risks. In addition to this, I have always had poor eyesight (requiring strong correction) that has worsened over the decades; family history indicates that I am likely to develop cataracts and/or ocular myopathy, leading to legal blindness. I “look forward” to worsening health–which is extremely concerning, considering I’ll be 58 later this year.

To be frank, my future life as a “senior” over the age of 65 will be little different from my present circumstances. Currently, I begin each day by struggling to get out of bed as my sleep is less than ideal (Fibromyalgia), taking medications, and combating acute brain-fog with caffeine. Each day is a battle-ground of acute cycling joint and deep tissue pain, monitoring for headache precursors, battling chronic depression, and ensuring that anxiety triggers are lessened (as they affect multiple conditions), while also attempting to be productive, keeping up with housework, interacting with close family, and advocating—mostly through social media—for issues concerning PWD. As my sleep is quite poor, I also require at least one regular nap throughout my “waking” day.

I think you would agree that there are precious few employers that would be willing to accommodate my specific needs. I find it (more than) mildly ironic that COVID-19 forced employers to consider work-from-home (WFH) solutions in order to address the mass work crisis resulting from this pandemic. PWD have been asking, begging, and pleading with employers to provide the same arrangements from the onset of employment for the past three decades; we have been universally ignored. Those few employers that offered WFH prior to COVID-19, did so very reluctantly, requiring invasive support documentation, as a reward for past service with the employer.

The simple, stark, and often ignored truth is that both before and since adopting the much lauded Accessible Canada Act (2019) (ACA) (Government of Canada), employers of all sizes across Canada have done precious little to even acknowledge the needs of PWD, much less address and accommodate them. In fact, the ACA is widely referred to (online) as the “Ramps and Braille Act” by the PWD community. My lived experience as a PWD has done little to give me hope that the proposed CDB will improve my circumstances.

CONCERNS REGARDING C-22

Bill C-22 fails to address important considerations in the context of legislation v regulation. Fully accessible standards for various elements must, in my humble opinion, be included at the legislative stage in order to protect them from any future regulatory changes. These include:

Inclusive PWD Conditions: Historically—prior to recent changes of the Disability Tax Credit (DTC)—PWD were generally categorized by physical impairments. Even within that narrow definition, episodic / intermittent conditions (Fibromyalgia, Lupus, etc.), auditory impairments, and most auto-immune conditions were either ignored / rejected or became “qualifying” only after repeated acute episodes.

The CDB must include language that protects all PWD regardless of their “category”: physical, mental, complex, etc.. If not, a considerable population of PWD will continue to exist in a no-man’s land where any support is dependent on varying definitions of PWD. Such as result would be in direct conflict with the Canadian Charter of Rights and Freedoms (CCRF : S3) (Government of Canada), the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (Global Affairs Canada), various Provincial Charters, and the aforementioned ACA.
“Working Age” Definition: This concern has been discussed in your Chamber, the Other Place, and widely within the PWD community. Given that Min Qualtrough has repeatedly referenced the OAS / GIS as models for the CDB, I am appalled that her office seems to be unaware of the conditions that many of Canada’s seniors live in. Her office is not alone in that misconception; rather, the general belief is that our seniors have “adequate” support. Given the expected increase in that population, the predatory influence of “reverse mortgage” promises, and the predicted future costs of post-COVID-19 Healthcare, it is imperative that our senior PWD not be left relying on the sub-poverty support of OAS / GIS.

You can appreciate that this weighs heavily on my mind as I inch closer to 65 every year.
Right of Appeal: Anyone familiar with the bureaucratic process of applying for Government assistance (of any kind) is well aware that they must be prepared to appeal an unsatisfactory decision. The current CDB does not ensure timely, fully accessible, informed, and applicant-centered adjudication. Relying on regulation to outline these “guidelines” leaves too much to the discretion of current appeal modalities—where individuals may not have the necessary education or expertise to review applications with an informed eye. There must be minimum standards entrenched in the legislation.

I find it astounding that these elements (and others) were overlooked when the CDB was introduced; they are typically entrenched—to some degree—in the legislation. These aren’t “technical details” to be addressed by regulation. These are the most basic answers to who is involved in parts of the process: PWD, senior PWD, and adjudicators.

POSSIBLE REMEDIES

Unfortunately, there are no easy remedies at this late stage–given the brief time left in the current Parliamentary session, the ever-present threat of a snap election, and, most importantly, the urgency being felt by the PWD community. Everyone involved is painfully aware that any further amendments run the risk of being rejected when the CDB returns to the Other Place; such a result would delay (if not outright doom) passage of this critical Bill.

I am certain—because I must be—that Canada’s “Chamber of Sober Second Thought” includes members with the necessary skills, experience, fortitude, and empathy to find language for any possible amendments in order to address some of these inadequacies. I urge your committee to consider language for any amendments that reflect inclusive minimums for PWD conditions, recommend revisiting the CPP-D program to expand eligibility to senior PWD (through regulation possibly), and entrench applicant-centered adjudication for appeals. You and your colleagues have an opportunity to shape legislation that will have generational effects; lifting current PWD from poverty will ensure better lives for us, our children, and those that follow them. This must happen.

SUMMARY

In conclusion, I must admit to a palpable dread when thinking of the CDB in its totality. I feel it, others in the PWD community feel it, our stalwart allies (in Government and otherwise) feel it, we all experience this cloud of uncertainty that works its way into every conversation. We feel this so strongly because we have been living with similar fears during our entire time as PWD. While we are (all too) familiar with this dread, it does not make experiencing it, yet again, any easier. Ongoing dread leads to malaise, which leads to apathy, which often results in paralysis—real or metaphorical.

I have spent 30 years “officially” living as a PWD—disregarding the prior years of trauma that led to this. I find no comfort in contemplating a further 30 years being forced to “survive” like this. It is unconscionable that any resident of Canada should be expected to feel this dread, constantly make the hard choice between shelter and food (rarely nutritious), and be restricted from free movement in a world-class country that is lauded internationally for elements of our social safety net and our CCRF, outperforms other countries economically, and is envied by many for our generous refugee program. I have to wonder how our reputation on the international stage contrasts so sharply to the lived experience of the most vulnerable members of our national community. It truly boggles my mind.

I urge the SOCI committee and your Senate colleagues to carefully weigh the consequences of proceeding too conservatively. I plead with you to imagine a single week trapped in the life of a PWD in poverty. I hold on to faint hope that you will find the strength to do what this historic situation demands of you.

Thank you for your consideration.

Works Cited

Arthritis Society. “Fibromyalgia - Symptoms, Signs, Causes, Diagnosis & Treatments.” Arthritis Society, https://arthritis.ca/about-arthritis/arthritis-types-(a-z)/types/fibromyalgia. Accessed 23 April 2023.

Global Affairs Canada. “Promoting rights of persons with disabilities.” Global Affairs Canada, 14 September 2022, https://www.international.gc.ca/world-monde/issues_development-enjeux_developpement/human_rights-droits_homme/rights_disabilities-droits_handicapees.aspx?lang=eng. Accessed 23 April 2023.

Government of Canada. “The rights and freedoms the Charter protects.” Department of Justice, 1 September 2021, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/rfcp-cdlp.html#s3. Accessed 23 April 2023.

Government of Canada. “Towards an Accessible Canada.” Canada.ca, 23 January 2023, https://www.canada.ca/en/employment-social-development/programs/accessible-canada.html. Accessed 23 April 2023.

Heart & Stroke. “Risk & prevention | Heart and Stroke Foundation.” Heart and Stroke Foundation of Canada, https://www.heartandstroke.ca/stroke/risk-and-prevention. Accessed 23 April 2023.

Gryph Daley

SOCI Brief (copy)

INTRODUCTION