Wise Words - Breaking Bad Style
I don’t watch a lot of TV, but when I heard RJ Mitte was visiting Australia for some public speaking engagements on ‘Overcoming Adversity’, I knew I had to get there. RJ has a starring role in the cult TV show ‘Breaking Bad’ (which I’ve admittedly never seen!) but he’s also a passionate disability advocate. He lives with Cerebral Palsy, but lives with it the best he can, and importantly (to me) with a positive, ‘can-do’ (albeit with a modification or two!) attitude. Now being a few years into my diagnosis, I’ve slowly realised that to help me cope with MS, I need to surround myself with positive people, not only those who are living with MS, but also my wider circle of friends. Throughout his 1-hour conversation, I learnt that RJ also shares this need. An overview of the night is found here on the Wheeler Centre site:
What I like about RJ is that he hasn’t let disability stop him from achieving his goals, and he has also used his ‘fame’ to help his community. He shared there’s no denying he’s been met with many challenges, (as all people who are living MS do, with varying levels) but he said it’s how you handle these challenges that is in your control. I was able to ask RJ a question at the Q & A session, which was: “I've recently started blogging with a positive approach to disability but I've found many in my own community aren’t that receptive to the positive posts, instead preferring mainly negative experiences to be shared. Do you find your positive approach to disability generates any negative feedback from your own community?”.
As outlined in the overview of the night above, RJ’s answer to this question was that “People with disabilities are sometimes encouraged to focus only on their struggles. That's limiting.” He spent a few minutes answering the question, and I felt real truth from his words. What I took away from this is that focusing only on our struggles can be personally limiting, limiting to those around us, and also to our community as a whole. RJ shared that he has had some negative feedback about his positive approach, particularly from the Cerebral Palsy community itself, but he also acknowledged that he has the right to adopt this positive attitude after overcoming (and still dealing with overcoming) issues of mobility, speech, and fighting for his independence. He commented that, just as he has, I shouldn’t let others dictate the story I am telling, because it is my story, not theirs.
When I was first diagnosed with MS I found it really challenging to find blogs and content that weren’t solely focused on negative experiences of MS. While no one is denying that these negative experiences are all too common (unfortunately) and they do need to be shared, the lack of positivity in online content initially left me with fears and expectations that MS was going to be the end of me. I’m not proposing that we hide away and only share our positive experiences, but it leaves me wondering why we, as an MS community, seem more encouraging of sharing negative experiences opposed to positive ones. Are we afraid of others judging us with our positive attitudes? Are we worried that others will undermine the condition if those living with MS adopt positive attitudes? While I’ve found the ‘hidden gems’ of positivity among bloggers, and the Uninterrupted platform has definitely been a big part of this, I think people are often hesitant to share their positive experiences of living with MS, and I wonder why this is.
RJ’s final piece of advice to me was to “keep posting about the positive experiences of living with a disability, because these insights are at least as important to share and publicise.” (he also said “do it to ruin their day”, but that’s not my style!!). So in the posts that I’ve hesitated to hit ‘submit’ on, I now feel a little more comfortable that it’s actually OK to have a positive approach to living with MS. I realise that, while it’s important to share my negative experiences with MS, I’ll no longer feel guilty or hesitant about sharing the positive ones as well, thanks to an insightful night in the company of RJ Mitte.