The disability narrative sits in a place of an immense divide within New Zealand, and many people want to control what the messaging of disability is when it comes to both accountability and the reflections to the wider community.
I am just as passionate about having real conversations with people about disability and the issues that they face than I was back in 2015 when my journey in this field started. So, where the hell have I been and why the sudden explosive blog?
Well, I am still here. I am live streaming more than I ever have before, and the enjoyment I’ve had over on Twitch.tv has been something that honestly took me by surprise. My nightly talk show, which began on Facebook and was heavily centered around me ‘having my say’ on disability matters, needed a bit of a break. I didn’t once want to stop streaming and making content, I just wanted to make something that was slightly more relaxed and something that didn’t just focus on disability.
As a platform, Twitch.tv offers a difference to a site like Facebook because suddenly I’ve been streaming to an entirely, for the most part, non-disability centric audience. The majority of followers I’ve gained on Twitch didn’t know I was disabled until they noticed the wheelchair emoticon (emoji) in the title of videos. What this approach did was allow people to ask the most basic of all basic questions about my disability, and I’ve been very deliberate about being as positive as I can possibly be about disability in response.
This, though, is quite different from the vibe that was often presented on #MikePulmanLIVE over on Facebook. That has been of tremendous value to me because I don’t feel as if I need to come on camera each night and find another disability-centric or motivational type delivery that I often felt was required on Facebook.
So, where is my headspace now in terms of my passions towards having those authentic, challenging, and at times confrontational discussions surrounding the disability community?
Leadership Within NZ’s Disability Culture Needs Real Grit
Firstly, I’m very proud of the discussions that I’ve been able to have in the space of disability, especially some of the more trickier ones that aren’t talked about much within the community, and even some of the ones where I called out certain names within the community. I made mistakes along the way, and while some people would seek to bury me for that, I reflect on those mistakes with a clear and stable mind.
And some of you reading this may not want to hear this, but along the way I also said some things that were of tremendous value towards getting the disability narrative away from the place that it is currently in.
The disability narrative sits in a place of an immense divide within New Zealand. Many people want to control what the messaging of disability is, and in large parts, those people are leading disability organisations but have no real-world experience of lived disability to fall back on. It isn’t as if disabled people don’t have the knowledge and the qualifications to be leaders of these organisations either, that is a stereotypical cop out that the community itself has rested on for well over a decade now whilst making little effort to strategize a new way forward.
Leaders being the key word here, I think the quality of our leadership within the disability community needs to be questioned at this point. I say that because it often feels like a lot of the people that are seen as a ‘disability leader’, or a ‘voice for the disabled community’, are sometimes guilty of letting the title of this go to their heads. Suddenly, it becomes more about showing their face than actually getting down to the nitty gritty and having real conversations about what is happening within their own community. Furthermore, these people are often guilty of relying upon and using too much of their own stories when it comes to delivering presentations and when talking to leaders/influencers at the highest levels.
I am not suggesting that these personal stories don’t have a place, because they absolutely do. What I am saying is, relying on stories to direct the future of this community will have an average effect at best. Everyone in the disability community knows full well about the struggles we face as disabled people. Whether it be accessibility, education, employment, neurodiverse, support service delivery, or anything above and beyond that, we cannot be picky about the things that we and don’t advocate for.
A comprehensive strategy needs to go alongside, and accountability of these leaders and voices should be demanded from disabled people and whanau.
What I am steadily getting more and more interested in is the concept of supporting individuals entirely from the ground up. For as flexible as new initiatives like Enabling Good Lives and the System Transformation project is for disabled people, are we talking enough about what’s not going well in these areas?
For example, how equipped, ready, and supported are disabled people who choose to fully self-managing their own support budgets and/or employing their own support staff? How do we ensure that local leadership groups are hearing all the stories about the experiences of disabled people and whanau under these new arrangements? What happens when misspending of funding occurs and does that mean the disabled person will be in debt for the rest of their lives? What happens if some disabled people are involved in legal situations because they didn’t have the adequate support prior to terminating the contract of a support worker?
To me, leadership is having the qualities of positivity, awareness, being solution focused, but crucially too, being able to cross over into murky waters and have the difficult conversations that need to be had at times. Leadership of this nature is going to be crucial in order to evaluate just where the disability sector is at as a whole, and it’s about ensuring that this leadership is non-exclusive and open to everyone.
A leader does not lead for the title. An advocate is not defined by standing. An influencer is not the most popular.