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How institutional stigma impacts Canadians living with Parkinson’s


Institutional stigma, sometimes called structural stigma, is responsible for a great deal of the preconceived notions we hold about others who live with conditions we don’t experience ourselves. These steadfast opinions have direct impacts on the laws and policies within society’s institutions, like our schools, workplaces, places of businesses, places of worship, hospitals, government and media.

Threading throughout societal institutions is an undertone of “othering” people who are different from the “normal” expectations. You can sense this undertone when government healthcare budgets for mental health services are cut back, when the media refers to a Mohammad Ali as a, “a trembling shell,” and when schools penalize pupils for their struggles with anxiety and depression. All which reinforces a message that if you are in any way different from the flock, you will not be allowed to participate or contribute to society.

The following story about a Canadian with Parkinson’s and their experience with institutional stigma only scratches the surface of the ripple effect it has on those impacted by Parkinson’s.

Institutional stigma in the workplace 

Philip Severin told his employer about his Parkinson’s shortly after being diagnosed with early onset at 45. He worked in a print production facility for more than 20 years before a tremor in his hand sent him to the doctor’s office. Philip recalls everything being ordinary from the time he disclosed his diagnosis up until the end of that year. But that following January, Philip was laid off along with the regular contract-ending exists that took place annually.  

When I called to ask about a return date they explained they wouldn’t be needing me any longer and asked me to come by to pick up my severance pay,” Philip says. “When I went in for the cheque, they handed me disability application papers, which hurt so much. I was always told I was a good worker. Having that much experience in the business, you think they could have accommodated me in some sort of way.” 

Philip’s experience isn’t unusual. Because businesses are not well supported or encouraged by government policies to accommodate employees with developing needs, Canadians like Philip lose their livelihoods – part of the financial impact of having Parkinson’s. 

In an ideal world, the HR staff within the organization would have received their designations from a college or university program that covered at length how to accommodate employees with a condition that presented evolving needs. But that would require education curriculum funding improvements at the provincial level.  

Institutional stigma hindered Philip’s employer’s ability to consider how he would still be of immense value to them as an employee. Philip felt the impact of it the moment he lost his job and for years to come.  

A multi-disciplinary approach to Parkinson’s battles institutional stigma 

Philip’s experience is what makes advocacy and education among elected officials and healthcare professionals so important. When policy makers are deciding on healthcare budget, they need to be aware of the growing number of people impacted by Parkinson’s and how it impacts us all differently.  

A multi-disciplinary approach to managing the symptoms of Parkinson’s means tapping into the specialized care of more than 10 healthcare and social work professionals to treat all symptoms and ensure a positive quality of life. To challenge institutional stigma, there needs to be a larger investment in the professionals who make up a typical Parkinson’s healthcare team:  physiotherapists, occupational therapists, speech language pathologists, dietitians and others. For instance, soon-to-be dietitians should have access to an education that emphasizes the importance of food and medication absorption. Family doctors should be directly encouraged to take continuing education courses about Parkinson’s so they know to refer their patients to a neurologist even when the four cardinal signs of the disease aren’t yet present. Social workers should be made aware of the increasing numbers of Canadians impacted by brain diseases and the unique social supports each person impacted by Parkinson’s requires.  

Doctorate student Neha Mathur and her research team published an article that speaks to the importance of this multi-disciplinary approach to managing Parkinson’s symptoms. When a Canadian with Parkinson’s has access to a full healthcare team, their quality of life is significantly better than those who struggle to access the same care. The research article shows that when mental health symptoms can be treated, physical symptoms often become more manageable, and the cycle of self-esteem and well-being gains momentum.  

Each of these 10+ career paths need to be rich with Parkinson’s-specific education. Making Parkinson’s a priority for curriculum developers and their advisors is the top-down approach to making sure these professionals head into their careers prepared to help the growing number of Canadians impacted by Parkinson’s.  

How would a more inclusive society alleviate institutional stigma? 

To become more inclusive is to think about the unique experiences of every single Canadian. The roadblocks people with Parkinson’s face at different ages, income levels, geographic locations and everything else in between, means their needs are unique and complex in their own ways, and all need to be supported by our institutions. As the old adage goes, “You don’t know what you don’t know.” Advocacy efforts are often needed to inform policy and law makers of what they don’t know. In this case, about the lived experiences of all Canadians impacted by Parkinson’s.  

Organizations like Parkinson Canada take on the challenge of educating political officials about the urgency of improved access to healthcare, employment opportunities, and education improvements within post-secondary education curriculums. The goal? To see more well-informed policies and laws  put into place that account for the unique needs of the more than 100,000 Canadians living with Parkinson’s.  

Visit our National Advocacy Roundtable Report to learn more about our efforts to raise the voices of Canadians impacted by Parkinson’s.

Want more on stigma? Want more on stigma? Here are blogs that cover the two other forms of stigma impacting people with Parkinson’s: 

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