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  • Writer's pictureMark Tremblay, M.A., M.P.A.

Self Advocacy: My Story of Disability Discrimination

By: Anonymous

The CF community is all too familiar with the idea of self-isolating, infection control precautions, and staying six feet away (from other CFers, that is), but the COVID-19 pandemic brought about some new challenges for many. As an adult with CF who has never required any accommodations beyond the need to utilize some sick time for a hospital stay, it was uncomfortable and unfamiliar to request a reasonable accommodation to work from home during the pandemic. When starting my career, I purposefully chose a “non-medical” profession because I recognized the risks for a CFer in the medical field. I never guessed I would come to a point of truly needing an accommodation to work from home in order to protect my health (that I have worked so diligently to maintain), but the time came when COVID-19 made it’s appearance, despite being in a “non-medical” workplace.

Not only is CF an invisible disease, but as a relatively healthy adult with CF, most people cannot understand why I would request or need an accommodation. I was not willing to take the risk of potentially catching COVID-19 from any of my 2,000+ coworkers. So, in March 2020, I made an official ADA (Americans with Disabilities Act) reasonable accommodation request to telework during the pandemic. The same day as my accommodation request, I was denied the accommodation and told I could use paid time off (PTO). I continued to follow up HR and my supervisors, claiming my status as a protected individual under the ADA, asking for answers as to why I was denied, and asking for the decision to be overturned. After three weeks of following up, I was finally approved to telework less than part time (only 15 hours per week!) and was told to utilize my PTO for the rest of my work week time. Of course, my PTO was exhausted quite quickly. Again, I requested an accommodation to work full time from home. This was denied, and I was thus demoted to part-time status and all my benefits were revoked, including my health insurance! You can imagine my anguish after investing over five years into my work, receiving “exceeds standards” on all my performance reviews, and being told that my department thrives under my supervision, for it to all be so quickly snatched away.

Not only did I experience job discrimination (and retaliation for filing Equal Employment Opportunity (EEO) complaints and Equal Employment Opportunity Commission (EEOC) charges, I also experienced professional discrimination as my department turned against me, administration (with whom I had great relationships prior to COVID-19) turned against me, and my professional career was destroyed: I can no have struggled to find work despite having a masters degree. (as a masters level professional who can no longer find work due to being terminated). For seven months, I appealed to my employer to allow me the opportunity to work. I pleaded with my department to continue trusting me as they once did. I applied for every job that I qualified for—150 and counting– all to no avail. Ultimately, I was placed on investigatory leave and then terminated. My battle is not over yet, as I am taking legal action against my former employer, even now over a year later.

Going through an experience like this is indescribable. It is hard to come up with words that shine even a dim light on the emotional toll this has had on my family and me. I’ve struggled with anger and un-forgiveness (still do at times) toward those who made the fateful decisions that have torn my career apart. I’ve spent numerous hours in tears over the emotional pain of being betrayed by those I cared for so deeply, and who I thought cared for me, both personally and professionally. I have felt incredibly lonely and isolated (physically isolated because of COVID-19, and also emotionally isolated as all my coworkers disengaged from me). I’m not sure I have ever experienced a darker period or time in my life.

On the flip side, I have had opportunities to practice kindness, love, and forgiveness in the cruelest of circumstances.

I have also connected with some incredible people who have offered encouragement, support, and courage. Lastly, my level of resilience has compounded as I face each day with a drive to bring justice to this brokenness. On an individual and personal level, I have forgiven (and continue to forgive) each person who is involved in my discrimination story. On a professional and communal level, I am committed to holding my former employer accountable to the federal and state ADA laws and state EEO laws. This is why I continue to fight for justice. I believe God has given me an opportunity to love in the face of cruelty, to show kindness in the midst of pain, and to seek justice in the depths of injustice. May I be found faithful in this mission!

Disability discrimination is real. We must work together to combat discrimination. Here are the ways, I believe, that we as individual CFers and CF caregivers can do just that:

1. ADVOCATE – Advocate for yourself, for the CF community, and for the larger community of those with disabilities.

2. DOCUMENT – Document everything. Maybe most of us are really good about keeping our medical records (or maybe not, and if not, work on that too), but documenting professional experiences can be equally necessary in situations like this. Thankfully, I prepared for the coming battle by keeping screenshots of every email and text message, and by taking detailed notes of every meeting. I also wrote down every bit of information that I heard that would support my case. Not only is this crucial from a legal standpoint (evidence!!), but it is also important as time goes on and our memory fades, especially if the battle lasts for years!

3. SEEK ADVICE – Seek advice from family, friends, those who care about you, and legal advice when needed. CF Legal is a great resource provided for CFers and caregivers. Also, most states have various organizations that offer assistance with disability rights and legal aid. Do not wait until the damage has been done before getting legal representation. Though my situation would likely be exactly the same, it would have provided me a lot of comfort knowing I had an attorney (who could speak the legal jargon) in my corner much earlier.

4. PERSEVERE – The easiest way out of my situation would have been to back down, find another job in the private sector before my termination, and wave the white flag of surrender. However, the system will never be corrected or even modified if we give up during the hardest times. Justice does not happen without a fight. The only way change can happen is when we press into the hard moments and keep going.

I recognize that my professional reputation may never be as it was. I also recognize that I will never be as I wasthe same. A situation like this will change you, but you have the choice to allow it to change you for the better. As I reflect over my discrimination story, I know that I have, to some degree, a better understanding and perspective of the what being oppressed looks and feels like (all oppressed peoples). I am more compassionate. I am stronger. I am kinder. I am braver. I am more secure in who I am. I am more secure in Jesus, my constant comfort and companion through these dark times. No amount of discrimination can ever take any of that away.

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