Dear Employer: Your Equity Job Posting Perpetuates Structural Discrimination

Me, leading service user research with marginalised patients and caregivers. [Image: a white nonbinary person with long red hair worn back, wearing large browline glasses, a grey sweater with a daffodil pin, a flowered button-down, and baggy blue jeans, sits by a white collapsible table. They appear to be listening to an elderly, feminine-presenting person who is seen from the back, with chin-length white-grey hair, wearing a pink sweater, grey trousers, and a pink floral scarf, and who appears to be gesturing with her hands.]

Dear Hiring Manager:

I am a disability activist and medical sociologist, with an academic background in the biomedical sciences, extensive experience in advocating for equity and inclusion, critiquing policy, building and maintaining productive relationships with stakeholders across the fields of healthcare and local government, and absolutely outstanding knowledge of the structural dynamics that influence health equity in Ontario society.

I also know, after sending out more than 100 job applications over the course of more than a year, that because my employment history is fragmented, most of my expertise has been gained through lived experience, and most of my writing and community engagement takes the form of Twitter threads and Facebook posts, that I am not going to get an interview for this position, much less a job offer. So I am going to use this space to explain why the privileging of extensive corporate CVs in equity-related job postings is inherently inequitable, and why that necessarily limits the scope of any equity policies and initiatives your organisation, and others like yours, seek to undertake.

To do so, I first need to tell you a story. I have been disabled since the age of four, though because of medical misogyny and the cultural norm within Western medicine to disregard patient complaints that appear overly subjective (such as pain and fatigue) I am only now approaching a conclusive diagnosis. Until my undergraduate studies, I was that student who was “going places”. I graduated high school with a 98.3% average, the highest in Durham region. I was in band and choir, and on the swim team. I ran fundraisers and volunteered for political campaigns. I got early acceptance and scholarship offers from all of the universities to which I applied.

By my third year, I had begun to struggle. My fatigue and chronic migraines often meant I missed 2 or 3 lectures a week — or if I was physically present, I took nothing in because I was exhausted and in pain. My professors in the elite Pathobiology programme at the University of Toronto refused the requests I made in my capacity as vice-president of my student union to accommodate disabled and neurodiverse students by posting lecture slides online. They cited intellectual property rights, and the concern that it would “just encourage students not to attend class.” Because I had no formal diagnosis, I had no personal recourse. My fellow students mocked and berated me for being so militant and using the word “advocate”.

By fourth year, my studies had become torturous. Waking up at 6:30 to make it to campus for my 8 a.m. lab course that required me to work while standing for three hours left me nauseated to the point of throwing up every Thursday morning. Halfway through the class my partner at the time would bring me a coffee and a roll and sit with me until I ate and drank something, while I pretended to take a bathroom break.

I was twenty minutes late for my neurophysiology final because I had woken up with a severe migraine, and began blacking out on transit requiring me to disembark and go lie down on the floor of a public bathroom until I was sure I could stand without fainting or throwing up.

Nonetheless, I graduated with a cGPA of 3.74 — Honours with High Distinction — and was accepted to medical school. By that point, however, I’d realised how deeply uncomfortable I was with much of Western medical culture — because of its profound inequity and uncritical engagement with power — and I rejected the offer. I had also applied, and was accepted to, one of the top design schools in the world, but because my family is not wealthy and no one wants to give a massive loan to a poor design student, I had to turn down that offer as well.

I took a year working a low-wage retail job, sinking further into debt as I did so, and applied and was accepted to OCAD University’s Interdisciplinary Design programme. While at OCAD, I completed a thesis on ethnography for healthcare design grounded in theory from the fields of medical sociology and science and technology studies. I worked as a research assistant for the Mobile Experience Lab where I contributed to a practice-led study of disability arts in Canada, and volunteered to manage a project focused on the design of augmentative and alternative communication technologies. This involved arranging and conducting interviews with AAC users, designing user testing protocols for our low-fidelity prototype, networking and collaborating with academics from other institutions to work toward a high-fidelity prototype, and presenting our work at academic and industrial conferences and to stakeholders including representatives from funding bodies and the provincial government.

During this time, I was also missing and sleeping through classes and meetings, and being berated rather than accommodated by my professors and my fellow students. I received my first (non-)diagnosis of idiopathic hypersomnia in my second year at OCAD, from a doctor at Toronto Western Hospital, who firmly believed I was sleeping 16–18 hours a day due to depression and berated me when his first- and second-line treatments for my condition didn’t work. I recently discovered he falsified my patient record in order to reflect his diagnostic bias. When I approached the Centre for Students with Disabilities at OCAD to seek accommodation, particularly in relation to a course with an 8 a.m. start time and a 50% participation component of the final grade, the director of the Centre told me that “if you can’t fulfill the requirements of your courses, maybe you should consider whether higher education is the right place for you while you’re so sick.” My programme director, upon hearing that I was sleeping 16–18 hours a day replied, “well, at least you look nice and well-rested!”

(Policy note: my experience with the Centre for Students with Disabilities at OCAD provides an excellent case study in the ways in which amendments 1–4 of Section 17 of the Ontario Human Rights Code are weaponised against disabled students and employees — and reflect policy written from an abled perspective, without a thorough understanding of disabled peoples’ lived experiences of personal and structural discrimination. It’s also worth noting that the province of Ontario has no explicit legislative protections for disabled students in higher education.)

Nonetheless, I defended my thesis successfully and graduated with a Master of Design and a cGPA of 3.79. Shortly before graduating, I returned to my low-paying retail job, because I was in debt and struggling to make ends meet, and I had no choice.

This job was physically demanding and exacerbated my pain, fatigue and somnolence to the point that I would fall into bed at night because I couldn’t bend my knees or back, would nap for a few minutes every lunchtime in the hopes of being able to get through the rest of the day, and would sleep for 23 hours on my days off, just waking long enough to drag myself down the street for some take-out fast food. My apartment was a filthy mess, I had no social life, and I exclusively ate take-out food because I could grocery shop only rarely and cook from scratch never. Needless to say, I was not able to participate in the kinds of passion projects that are de rigeur in building one’s portfolio as a design / innovation professional, nor write the many academic articles I had initially planned to produce from my thesis. Thus began my slide into professional irrelevance.

Nonetheless, in the few free hours that I spent awake, I did continue to do small freelance graphic design jobs, and to do uncompensated graphic design and managerial work for my employer, in the the hopes this might lead to some professional advancement. I also continued applying to both design and research positions. It should once again be noted that in order to accomplish these things, I had to sacrifice every other part of a normal existence, such as eating healthy food, exercising, pursuing leisure projects, or interacting with people socially.

In 2015 and 2016 I had a small professional ‘break’ — taking on two short-term academic contracts in rapid succession. Although I successfully managed a pilot project in digital health service design during the latter of the two, the combination of the compressed timescale of the contracts and the extent to which I was by that point struggling without adequate treatment or accommodation for my disabilities meant that I produced no publications. Thus, in a job market that values ‘proven ability’ and ‘demonstrable results’ these two job experiences are not just dismissed as worthless entries on my CV — they count as black marks against me because they represent more than a year of professional activity that passed me by without any objective measures of success to show for it.

At this point, I am well aware that without going back to school and effectively starting my career over (which I cannot afford to do because, once again, I am poor) my patchy CV lacking in objective measures of my skills and experience means I am never going to be hired into any of the jobs for which I am eminently qualified. And since low-wage jobs are not accessible to me, and I am now impaired enough that I couldn’t continue to sacrifice my health for one even if I wanted to, that means that I am embedded in poverty and unemployment, living in my parents’ home, housebound in a small rural-suburban town with what could generously be described as minimal public transit.

Why have I shared this lengthy story, in contravention of the common wisdom that cover letters must be concise at all costs? Because this is what structural discrimination and inequity looks like. It does not take the form of tidy facts and figures. It consists of the lived, complex experiences of people with marginalised identities that are messy and hard to describe precisely because they do not get recorded in the canon of privileged scholars and decision makers.

And this brings me to my explanation of why failure to accept lived experience of marginalisation as a professional credential equivalent or superior to formal professional experience fundamentally prevents organisations like yours from ever achieving any sort of comprehensive inclusivity or equity.

Because here’s the thing: despite what my ignominious CV might lead you to believe, I am an expert in equity — and particularly in health equity. I am accepted and respected within a wide international circle of absolutely brilliant, passionate, committed, unpaid, unemployed disabled activists who will often spend 60 or 80 hours a week working to make this world more inclusive and more critical — in a word, better — while mainstream media, decision makers, and employers continue to ignore and oppress us.

And by preferentially hiring people with the kind of class, gender, race and abled privilege that has allowed them to amass prestigious job titles and impressive productivity figures to point to to demonstrate their worth as employees, you perpetuate a system in which marginalised voices are excluded from the canonical knowledge and policy decisions of our society.

I am well aware that by this point you have stopped reading this letter. But for the sake of completionism, here are my responses to the seven questions your posting has asked applicants to answer:

1.Do you have experience with harassment and discrimination complaint intake, complaint resolution through mediation, negotiation and/or complaint investigation? Please briefly describe your experience.

No formal experience. I have provided extensive guidance and education regarding employment, education and healthcare discrimination to many members of the disabled and chronic illness communities, via online support groups and private messaging. I also handled equity complaints related to the stocking of offensive products and ableist harassment in my retail role; this was particularly challenging because my employer invariably thought they were ‘ridiculous’ and ‘overblown’. Please contact my references in the disabled community for verification.

2. Do you have experience providing safety planning and referrals for individuals experiencing domestic violence? Please briefly describe your experience.

Not formally, but I have provided support to fellow disabled people experiencing domestic violence and, through my engagement with the disabled, chronic illness, and queer communities on Twitter, am familiar with many of the resources and procedures necessary for safety planning. I am also a researcher with ten years of experience, so I am great at internalising new information and procedures very quickly.

3. Please identify your skills in the area of investigation and conflict resolution including mediation and negotiation.

I have ten years of experience in research, six of them in the area of qualitative social sciences as applied to the healthcare field. I am a skilled interviewer and communicator, and my work in online activism has enhanced these skills. I am excellent at designing questions to elicit tacit knowledge and unexpected insights, whether in the context of running user research and stakeholder engagement sessions for a digital health project, or managing weekly Twitter chats for the #CripTheVoteUK campaign (see below for more information). My four years of retail experience made me outstanding at conflict resolution, as I was often required to pacify enraged and condescending customers whom my employer refused to deal with. I have continued to apply these conflict resolution techniques when attempting to negotiate conflicting user needs in the context of design projects, and when seeking to educate others about issues related to disability rights and intersectionality.

4. Please describe your experience developing and leading training on any or all of harassment/discrimination/violence prevention, anti-oppression, domestic violence, conflict resolution.

Please refer to the entirety of my Facebook and Twitter feeds, and my blog. I’m not being facetious. Most of my time and energy this year has been dedicated to educating the public about discrimination and oppression, particularly within healthcare contexts, and it’s high time that employers, politicians and academics alike start recognising the important advocacy work that goes on in social media spaces.

5. Please describe your experience providing leadership on initiatives related to eliminating discrimination and oppression.

I am co-founder and social media manager of the #CripTheVoteUK campaign, a grassroots movement that has grown out of the original #CripTheVote, and which seeks to emphasise disability rights as a key issue — and human rights emergency — in the context of contemporary British politics. Our hashtag trended to number 5 on Twitter within our first week of action, gained 1,000 Twitter followers in our first two weeks, and has been covered in The Guardian, The Independent and on Al Jazeera’s The Stream within our first month.

6. Please describe any lived experience with and/or knowledge of discrimination and oppression.

Please see above. I would like to note that it’s great that you have asked this; however, the ways in which all of your other questions are framed devalue experiential knowledge and reveal that formal credentials are still highly privileged by your hiring process.

7. Please describe any experience you have had working or volunteering with equity seeking groups in the community.

I am an active and well-respected member of the online disability activism community. Please consult my Twitter and Facebook feeds, my Medium blog, and my references from the disabled community. As mentioned above, I am co-founder and social media manager of the #CripTheVoteUK campaign, a grassroots movement that has grown out of the original #CripTheVote, and which seeks to emphasise disability rights as a key issue — and human rights emergency — in the context of contemporary British politics.

In conclusion, I strongly believe I am highly qualified to play a leading role in development of health equity and human rights organizational change at Sinai Health System. I also strongly believe that equity postings such as this that do not explicitly give equal or superior weighting to lived experience of marginalisation perpetuate the kinds of structural inequity you purport to be working against.

If by some miracle you are actually interested in speaking further with me about my skills and experience, I would welcome the opportunity.

All the best,

Alex Haagaard

One clap, two clap, three clap, forty?

By clapping more or less, you can signal to us which stories really stand out.