{"id":36584,"date":"2022-05-25T09:19:35","date_gmt":"2022-05-25T13:19:35","guid":{"rendered":"https:\/\/www.parkinson.ca\/?p=36584"},"modified":"2022-06-23T15:33:12","modified_gmt":"2022-06-23T19:33:12","slug":"social-stigma-and-parkinsons-being-stigmatized-for-looking-different","status":"publish","type":"post","link":"https:\/\/archiveparkinson.thedev.ca\/fr\/social-stigma-and-parkinsons-being-stigmatized-for-looking-different\/","title":{"rendered":"Social stigma and Parkinson\u2019s: Being stigmatized for looking different"},"content":{"rendered":"

Social stigma can be felt by anyone who looks or acts differently in society. When it comes to Parkinson\u2019s, social stigma refers to the beliefs people hold about others with Parkinson\u2019s and the actions that result from those beliefs. <\/span>\u00a0<\/span><\/p>\n

To understand how social stigma comes about, we can ask ourselves how we perceive different people in our society. Do we see people with chronic depression as people who are simply choosing to think negatively? Or as people with an illness that needs treatment, accommodation, acceptance and compassion? Do we see people who move more slowly as fragile and unable to do their job? Or do we see them as people just as qualified as ourselves who require accommodation to do the same caliber of work as us (or better)? <\/span>\u00a0<\/span><\/p>\n

Here are a few stories from Canadians living with Parkinson\u2019s about how they have experienced social stigma in their lives and how they are addressing it.<\/span>\u00a0<\/span><\/p>\n

The social stigma of a hand tremor leading to diagnosis<\/span>\u00a0<\/span><\/h3>\n

\"ManDiagnosed with early onset Parkinson\u2019s at 45, Philip Severin saw how his colleagues spoke negatively about an employee with a drinking problem who displayed withdrawal symptoms like shaking hands. When Philip developed a tremor in his hand, he was fearful that the same social stigma would be applied to him and engaged in conversation with his doctor. That conversation ultimately led to receiving a diagnosis of Parkinson\u2019s. In essence, his colleagues\u2019 attitudes and behaviours towards someone with shaking hands was responsible for Philip opening a dialogue with his doctor.\u00a0<\/span>\u00a0<\/span><\/p>\n

Philip reflected on the news of his diagnosis by remembering an acquaintance from earlier in life who had had Parkinson\u2019s. That person was very high functioning and needed little help. Philip felt he would manage his Parkinson\u2019s similarly and was able to learn to communicate his need to prioritize his independence. \u201cBeing able to communicate your needs is important,\u201d Philip says. \u201cAs situations come up where those closest to you stigmatize you as needing 24\/7 care and doting on you well before your symptoms require it.\u201d <\/span>\u00a0<\/span><\/p>\n

Before he found the ability to express when he didn\u2019t require assistance, Philip attended a barbeque and sat on a lawn chair positioned on a slight downward slope. Many of the guests at the barbeque expressed alarm for Philip\u2019s safety, but he felt sturdy, safe and wanted to be left alone. Now, he\u2019s found ways to communicate his independence and ensures people aren\u2019t stigmatizing him as someone needing constant support. It\u2019s created trust between him and his support network as they know Philip will ask for help when he needs it, too.<\/span>\u00a0<\/span><\/p>\n

Social stigma when people don\u2019t recognize or understand the symptoms of Parkinson\u2019s<\/span>\u00a0<\/span><\/h3>\n

It\u2019s an unfortunate reality that our society is quick to pass judgement on those who move, look or act differently than expected. As we do everyday things like grocery shopping, banking and attending social gatherings, we encounter people who may or may not recognize Parkinson\u2019s symptoms or understand how symptoms ebb and flow, too. So, a shuffling walk, masked face, slowed movement, or any combination of motor-symptoms may bring about judgements from strangers.\u00a0<\/span>\u00a0<\/span><\/p>\n

For instance, a stranger in a grocery store once accused Philip of giving \u201cdirty looks.\u201d Facial masking as a symptom was not on this person\u2019s radar, and they resorted to passing judgement.\u00a0<\/span>\u00a0<\/span><\/p>\n

As we covered in our piece on internalized stigma<\/a>, these judgments are hurtful and often leave lasting effects on people with Parkinson\u2019s, making it difficult to even want to leave the house. In Philip\u2019s case, he tapped into his communication skills and chose a gentle teachable moment for the person. He overheard what they were looking for and found it further down the aisle for them. When he called out to the person to start the conversation, it gave them a chance to think twice about their assumptions of Philip. While in this particular situation, Philip didn\u2019t start the \u201cthis is what Parkinson\u2019s looks like,\u201d conversation, he knew their judgements were rooted in a lack of knowledge. And he doesn\u2019t let those remarks cause any further anxiety for himself \u2013 a symptom of Parkinson\u2019s Philip also experiences.\u00a0<\/span>\u00a0<\/span><\/p>\n

\"\"Greg McGinnis, who was diagnosed with early onset Parkinson\u2019s at 39, recalls countless interactions like Philip\u2019s in grocery stores and other settings that, up until somewhat recently, would make him incredibly angry. It wasn\u2019t until Greg connected with a Parkinson Canada support group in his area that he was able to begin processing the impact of these encounters, and how to find compassion for those passing judgement. Since<\/span>\u00a0then, Greg has embarked on a Parkinson\u2019s advocacy journey to help battle the social stigma he\u2019s felt stung by more times than he can remember. <\/span>\u00a0<\/span><\/p>\n