Dementia Advocacy Canada co-chair Mary Beth Wighton breaks down what it means to be an advocate

For Mary Beth Wighton, being an advocate is at the core of who she is.

“I truly believe that I have dementia because I was meant to,” says Wighton. “When we talk about, ‘What do you think you’re on earth for?’ I think I’m on earth to be an advocate.”

As founding member and co-chair of both the Ontario Dementia Advisory Group and Dementia Advocacy Canada (DAC), Wighton, who was diagnosed with frontotemporal lobe dementia in 2012, is passionate about using her position to help amplify voices with lived experience. She works to ensure that people living with dementia have a say in the matters that impact them daily. 

Here, Wighton speaks about how she defines her work, the importance advocacy continues to hold and what she hopes to pass on to advocates who succeed her.

Q  |  How do you define advocacy? 

A |  We have different types of advocacy. You can be an advocate for yourself. You can be an advocate for others. You can be an advocate at a national or international level. But when we break down what it means, it’s standing up for things that you believe are right — perhaps on a moral basis, perhaps just simply on a human rights basis. And that need is in all types of advocacy.

Q  |  What’s the importance of being an advocate for yourself?

A | It is extremely important to advocate for yourself. You are your own expert. You must raise your voice and state what you need, want and have the right to. By doing this, you are taking the reins to your life and working to have others understand you. We cannot assume people know what is best for us unless we tell them. Self-advocacy takes practise and may be scary initially, but you can do it.

Q  |  What’s the importance of collective advocacy through organizations like DAC?

A | When you band together and have a collective input on priorities, and people understand what those priorities are and what they’re advocating for, it provides a stronger voice. If all of us go to the government, 465,000 people one at a time, then we’re just 465,000 people one at a time. But if we stick together and we say, ‘These are the three things that we want, and if we don’t get it, then 465,000 people are not going to vote for you,’ that gets a little stronger. So, we’re able to have a larger impact, and maybe a more profound impact, than individually in activism.

Q  |  You’ve put in a lot of work as an advocate – why do you do it?

A | It has provided a sense of purpose for my life. I’m retired, so I get a fulfillment. It feels good to have a purpose every day. And often it is every day. 

But with that said, I am cutting back and moving to full retirement. Because my dementia itself is changing, it’s getting worse. And this advocacy comes at a cost — if I’m here with you, I’m not with my partner. That’s the cost.

So, my advocacy is moving from, ‘It makes me feel good,’ to ‘I need to help identify and promote other advocates so that us old dogs can retire and not feel guilty.’ That’s the challenge right now.

Q  |  Why should people get involved in advocacy work?

A | People should advocate because you can change something that you’re not happy with. You can move things forward that perhaps are stagnant. And by raising your voice, you can move that beyond the metre. You can participate as an advocate because it will make you feel accomplished, and inside you know you’ve done something good — something you can be proud of. [ ]