Listening to the Disability Community: Stories That Demand Better Workplaces
Introduction
Whimble truly cares about the community they serve and recognizes the barriers people with disabilities face in the workplace. They brought us - Erica Carson-Sami (CARCO Disability Strategies) and Sydney Elaine Butler (Accessible Creates) - together as experts in the field of disability and employment, to highlight the lived experiences of the disability community as they navigate through their employment journey. In the true fashion of “nothing about us without us,” we created a survey and looked to the community for guidance to inform this project and our next steps.
To Our Community
Disability in the workplace can be an emotional topic that is fraught with bad experiences and even traumatic ones. We want to thank our thirty-five respondents for their vulnerability, honesty, and willingness to share. Many respondents mentioned being inspired by other people with disabilities who courageously advocated for themselves at work and expressed that they were sharing their stories in the hopes of doing the same for someone else. One respondent said, “I have become more comfortable, and learned how to advocate for myself in part by watching the courageous vulnerability of my clients as they advocate for their needs in their own [work]spaces”. This is something that we’ve always admired about the disability community – their willingness to help and cheer on their peers.
As we reviewed the responses, we encountered stories that were consistent with what we hear daily, so we weren’t flagging them as “notable quotes”. When we noticed this tendency, we knew we had to recalibrate. The truth is that nothing about these experiences, regardless of how common they are, should be considered normal or typical for an employee. Sometimes we wonder if any other employee was treated in these “typical” ways, whether there would be more outrage.
Difficult Outcomes and Stories of Strength
While going through these responses, it became painfully clear that while self-advocacy in the workplace can be empowering for disabled employees, when reactions, actions, and outcomes are positive; disclosure and accommodation requests are too commonly met with upsetting results. We read countless stories of employees whose disclosure was disbelieved, who were asked for unnecessary proof of their disability, and whose requests for accommodations were ignored or denied. In some cases, individuals were given fewer responsibilities in their roles, delayed a promotion that was in the works, and even let go soon after they disclosed their disability or asked for accommodation.
Horrifically, these situations are often amplified for racialized people with disabilities. One respondent who is a racialized person with disabilities explained that despite having the same disability as her white colleague, her colleague’s accommodations were approved without requiring doctor’s notes, while the respondent is routinely forced to submit them, thereby “proving” her visible disability. Similarly, they state that their team “bends over backward to accommodate [their colleague’s] sensory-related disabilities while my invisible disabilities are questioned”. Combined experiences of ableism and racism are undoubtedly traumatic in ways that white colleagues cannot begin to understand.
As one of our respondents so beautifully articulated, “self-advocacy is present every day”. And yes, this is very true. But one would hope that most days on the job are not about continuously fighting the same battle day after day, but rather maybe the “little things” such as speaking up for yourself in a meeting and asking if your teammates could dim the lights because your symptoms are particularly heightened that day. However, many of our respondents acknowledged that their self-advocacy on larger matters, such as a request for an ergonomic assessment, continued for months, and sometimes even years. To this, we can only applaud respondents for their strength and perseverance.
The Toll on Mental Health and Important Considerations
Interestingly, the notion of proving one’s worth in the workplace appeared in both positive and negative experiences. For example, one respondent states in re-telling a negative experience that there was a “pervasive and consistent sense that I need to prove myself and my worth in order to receive or maintain accommodations that I am entitled to”. However, for the same respondent, this sense of proving oneself re-appears in their positive story as well that they were able to work remotely, “partially because I have ‘proven my worth’ to them”. This begs the question(s): why is it that people with disabilities are often forced to prove their skillset and belonging even in cases where an employee’s disability is more accepted by their employer? Is it a combination of both external and internal ableism?
While 48.6% of respondents were highly likely to disclose their disabilities, there is no doubt that even those respondents fear reprisal or backlash from their disclosure. In response to our question asking respondents to check all that apply to them: 60% claim that their visible disability is why they disclose, another 60% claim a lack of understanding around supports, 54.3% claim a fear of stigma, and 42.9% claim a fear of not being hired, promoted or not given exciting opportunities. Therefore, employees with disabilities are living in a constant survival mode or consistently feeling like they need to prove their belonging in a workplace. This is exhausting, both physically and mentally. The responses from the community clearly demonstrated the immense toll these experiences have on one’s mental health.
As we have determined, even in cases where your workplace is more inclusive and supportive of your needs, self-advocacy is something that occurs on a regular basis in the workplace for people with disabilities. We hope that these five considerations may help you in the future:
1) Find allies in your workplace that you trust and ask for their support. People with disabilities often experience advocacy fatigue in all facets of life, including on the job. It may be helpful to have an ally who feels comfortable raising their hand to question whether something is accessible or not, or even to suggest creative workarounds to inaccessible practices. This will help in that you won’t always feel like you are the only one advocating for accessibility. One respondent said, “I don't want [my supervisors] to see me as a problem employee,” and having allies may also help with this.
2) Depending on the company’s size, your employer may not have a Human Resources department and may not understand the proper procedures for disability-related requests. It would be prudent of you to ensure that your requests are well-documented with dates and any relevant correspondence. If there was an informal meeting about your request without official documentation. It is critical to have documentation for your protection. You may wish to consider sending an email similar to the one below:
“Dear (name), I wanted to follow up on our conversation regarding my previous request for speech-to-text software on [insert date], now that I’ve had time to process it. I want to clarify that my request has been denied because of …[reiterate what you were told]
Please reply to this email so I can have an electronic copy.”
*This may also help at a later date if you need to file a human rights complaint, which two of the respondents have reported having to do.
3) Remind yourself of your skills and qualifications regularly. Keep a ‘Journal of Wins and Accomplishments’ where you write down (and date) certain professional accomplishments. It could be the completion of a large project, or even the arrival of an accommodation that you fought for. This can be a great confidence booster when yours is wavering. Additionally, a journal like this is helpful when preparing for job interviews.
4) Prioritize your mental health. If this job is taking a toll on your mental health, and there is little evidence that their attitude toward disability will change, you may wish to leave this employer. This comes with a major caveat: we know that financial stability is critical to well-being, so you may not be able to leave your job without a backup plan. That being said, maybe it’s time to start looking for a new, more accepting employer. Remember: You are a skilled professional, and you should not be made to prove yourself or be denied requests for tools that support your success in the workplace.
5) This last consideration is not for everyone. Choosing to be an entrepreneur is a significant life decision that comes with both upsides and downsides. There is a reason entrepreneurship is a common choice among people with disabilities; they may have tried more “traditional” approaches to employment but found them to be incompatible with their access needs, especially given the current structures and expectations of the labour market. Entrepreneurship enables you to make your own schedule, rest when you need it (mostly!) and to focus your talents on causes that matter to you. You also have control over what tools and equipment you may need when working. But, in all honesty, most people struggle to turn a profit for the first couple of years. This is stressful in itself for many reasons, but it can also lead to hustle culture, which can lead to burnout. To leave your job and pursue entrepreneurship is not a decision to be taken lightly, but we would be remiss to leave it out.
Conclusion
What we heard from this community is both a call‑out and a call‑forward. The struggle is very real, but so is the resilience. By listening to employees with disabilities and their experiences, we can build workplaces where accessibility isn’t viewed as a favour or a compliance response. When we truly listen, we take the first step toward creating a culture that values the lived experience, skill set, and leadership of individuals with disabilities, both inside and outside offices and boardrooms.
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