Who’s Really Representing Disability in Parliament?

Ministers responsible for representing disability rights are having a tough go of it down in Parliament. Why aren’t more disabled people leading the conversation? 

The question of representation at a political level has long been a talking point amongst the disability sector, often one of frustration. There is a very strong belief that in order to achieve more politically, more people who actually have a disability need to be the ones doing it.

Many national organisations and community groups have disabled people in key decision-making roles already. The United Nations also have disabled-people in charge of the conversation for that specific area.

It just makes sense right, surely that lived experience and first-hand learning counts for something? It’s not just about being able to identify as someone with a disability, either. One of the biggest gripes advocates have is how the issues impacting people in the community are so often spoken for by the non-disabled, without any understanding of the real-world impacts of what is involved.

Comments by the Associate Minister of Health in response to yet more reports of funding freezes for Disability Support Services are a good example.

As concerns over continued funding cuts are raised, to hear Julie Anne Genter basically palm them off as nothing more than operational matters would do doubt have insulted many disabled people and families being impacted by what the Ministry of Health is doing.

Ok, ensuring gender pay equity and meeting demand may be seen as simple operating matters, but surely Genter can’t be convinced that adding an additional $72m for these areas alone equals results that deliver greater choice and control for how disabled people get the supports they require to simply live life?

If so, then who is giving her such advice? The non-disabled? Remember, we are talking about 24% of New Zealand’s total population.

That’s no small amount of people, imagine what the number could be had more disabled people been able to participate in the census. Imagine what the results would be had a more regular disability survey been initiated by the Government. What about the extra un-accounted extra 25% of people requiring disability support suddenly coming out of the woodwork?

Carmel Sepuloni, the Minister for Disability Issues and Social Development, gets the best grade rating from those inside Parliament. Her comments on a recent podcast where she said adding more value to the disability workforce shouldn’t, in anyway, undermine disabled people’s right to accessing quality services weren’t only obvious, but one of the more real things a minister has said about this sector in some time.

Meanwhile on the education front, Tracey Martin admitted back in April that despite significant funding boosts, early intervention for disabled learners in education had fallen short.

Who’s Really Representing Disability in Parliament?

The general school of thought hasn’t changed much over the years when it comes to who is ultimately responsible for making the changes needed to better the participation, rights, and lives of disabled people in New Zealand.

The buck stops with Government and it’s their responsibility to make it happen and stop discriminating, right?

This is just as much an awareness issue as it is one of the Ministers involved having the ability to pull the right levers at the right time to get a result that is halfway decent.

Those Ministers aren’t only not disabled, but they grew up in a society that didn’t place emphasis on those forgotten in marginalized communities.

The point being is that shifting attitudes in society goes well beyond what the Ministers are doing in Parliament, but they can be, in a big way, very effective leaders of that conversation. That current track record goes to show that there is a lot of room for doing things differently, starting with a more deliberate and frequent conversation about disability matters.

Like how Government targeted mental illness with the wellbeing budget of 2019, how do they get disability issues to be a big talking point in 2020? It is an election year so the community should expect a bit more and will do doubt get something to talk about from ministers.

Just what exactly? Well, it may just time in with evaluations and decisions on the future of Mana Whaikaha (Enabling Good Lives) quite nicely with an eye toward announcements in early 2021. That’s not exactly a vote-shifter though.

But nevertheless, go to any disability gathering of note that seeks to ask the hard questions of Government officials, usually it’s those very officials dictating the terms of conversation.

That’s what needs to change, pronto.

I’m Disabled, My Possibilities Are Limitless

Just because a term may have an official definition, that doesn’t make it true or worthy to be fighting against.

As a disabled person myself and a passionate activist for the rights of disabled people, I’ve never identified with how the use of words like ableism is currently being applied. I agree that discrimination exists and that disabled people face a variety of social, economic, and educational barriers that continue to prevent us from having the equal platform that we’ve been fighting for.

However, that isn’t a concession that ableism is ok and should continue to be used in the manner that it is.

After 27-years of facing inequality in all the areas mentioned above, I am not convinced that the so-called ‘ableism’ as its labeled is a simple matter of blatant discrimination. Furthermore, I am growing uncomfortable with how we label non-disabled people when we ourselves are the first to be outraged when labels are placed on us.

Are we suddenly stooping to the same level as those who’ve labeled as? And if so, why?

Maybe I am playing devil’s advocate here, but further to my earlier point, I also remain unconvinced that the disability community should be using words like ableism, ableists, abled allies, and more in the manner that it is. Especially recently, I’ve noticed a big increase in the use of these words, especially how we are accusing non-disabled people of being ableists and placing the blame squarely on them for all the frustration we feel due to the treatment we often receive.

Take the recent #ThingsDisabledPeopleKnow social media movement for example. The number of times you would have read the word ableism in some 20,000+ tweets would stagger you, and I immediately argued that simply because a word has an official definition (aka ableism), doesn’t make it true.

It’s all about interpretation, and speaking of interpretation, some of the things I’ve read in recent weeks suggest to me that many disability rights activists are prepared to now start a war against non-disabled people and the institutions they serve.

Furthermore, our community can often get extremely angry toward the so-called “abled allies”, take the recent Crutches and Spice blog as a good example where Imani Barbarin wrote that “Bryan Cranston is everything I will not be accepting from abled allies in 2019”.

The question then becomes – is all this a result of years and years of frustration coming to a head and finally making some legitimate headway?

The numbers of disabled people worldwide facing discrimination cannot be ignored and this is not some made up myth. Speaking of myths, disabled people are educated and can bring a lot of benefit to the workforce. One of the biggest reasons this myth exists amongst some non-disabled is down to how invisible disabled children are in the schooling system. If New Zealand is anything to go by, many disabled learners are often grouped together in special education units separated from the mainstream classroom.

I’ve personally argued for years that one of the best things we can do to better serve lifetime inclusion of disabled people is by starting from the earliest moments of entering the education system and having disabled kids visible to their non-disabled peers in a way that doesn’t suggest some kind of poignant difference.

Disabled people are not special just because of their disability, and we are (in my mind at least) entitled to nothing more than an equal footing in all the areas I mentioned at the start of this blog.

But it’s how we go about achieving this equality, and we should always ask ourselves how productive the things we say within our own community are when it comes to reaching the eyes and ears of those outside of it. Personally, if I wasn’t disabled and I heard someone labeling me an ableist because of my ignorance, I’d do little to change my behavior because I’ve just been labeled something that I’d likely not understand in the first place.

Ableism Doesn’t Restrict My Life

Call me an apologist for the non-disabled, throw all the stats, state all the personal examples of your own personal experiences to back up why using these labels in discourse is appropriate because I remain unchanged on one simple argument.

That argument, dear reader, is a two-fold one. First, as disabled people advocating for the equality we crave, we must accept that a big key to success sits outside of our own community and will likely not be controlled by us, we don’t hold the cards and we shouldn’t own all the conversation, either. The cards sit in the hands of a productive, co-design approach to all levels of policy, leadership, and data that impacts and influences social, economic, educational, and really, all drivers of modern society.

Second, and I say this as a disabled person… one of the biggest keys to advocating and thinking critically about the best ways to achieving equality for disabled people is having the ability to place ourselves in the mindset of non-disabled people and think about things from their point of view.

Yes, we are frustrated and yes, we have every right to be. It’s beyond comprehension that in 2019 we are faced with some of the barriers that we are.

But let’s be productive about this. Creating a community, sharing information, and linking with people of similar mindsets is great. But what about where all of that goes? Where does the current level of discourse go in the long run?

Keep in mind, this is just one man from New Zealand’s point of view, but I choose to challenge myself first. As a disabled person, my possibilities are limitless. Literally none, and I mean none, of the success, failure, and missed opportunity I’ve experienced in 27-years has been down to my disability or the attitudes of those in front of me who don’t experience what I do each day.

I’ve just made a conscious effort to keep it real, trust in my own abilities and acknowledge my weaknesses, and not be forced into thinking a certain way about disability. As I said, my possibilities are limitless. It’s all on me, I am owed nothing and I work to make my platforms in life as equal as possible. That’s literally all I can do.

So, what do I think about terms like ableism? Simple. You get more bees with honey than you do with vinegar.

2017 Year In Review: On The Outer

2017 was a year of immense personal challenge, growth, and a few big mistakes that I’ll reflect on for the rest of my life. 

Starting the year; I found myself unemployed and very much ‘on the outer’ of the disability sector. After over three-years of giving everything I had as a public speaker, communications guru, and general advocate for the rights of people with disabilities; things had suddenly gone really wrong very quickly.

It wasn’t a great space to be in. Being bitter about it was an understatement, I was bloody pissed off! It felt like I had been on this really good run, where a lot of people respected me, but the minute I went ‘against the grain’ and tried to have tough conversations, nobody in the sector wanted to listen.

Not only did it feel like nobody wanted to listen and engage in certain areas, I was made to feel like I was nothing more than a shit stirrer; someone who wanted attention by being deliberately hostile and controversial. That made me frustrated, and very resentful to more than a handful of people. I learnt quickly who my friends were, and who weren’t, but it got to a point where I lost confidence in myself as an advocate. I started believing that I actually was just a shit stirrer, and that led to a point of self-loathing that in turn led to some very stupid decisions in my personal life.

It’s ironic too, because the reason I had even been noticed in the first place was because I was a disabled person doing different roles in media and radio, whilst studying full-time. A few organisations heard of my story, and they wanted to connect with me. The big turnaround in fortune, from popular to hated very quickly, at the end of 2016 left a bitter taste in my mouth as I said.

For weeks, I reflected on the countless conversations I had with literally hundreds of people. Some of those people worked in organisations, and others were families and children that live life with a disability. Guess what I realised? There was, and still is now, a major disconnect between those two groups. In fact, I’d go as far as saying that this disconnect is as worse as its been for a very long time. Families are losing faith in the system, as well they should. There are only a handful of advocates who aren’t governed by an organisation, and I’m one of them.

2017 Year In Review: On The Outer

When I realised all that, I simply had no choice about where to go next. It all becomes quite simple really; realise that peoples’ opinion of me is out of my control. No matter what you do, people will take their own narrative from the things you say and write, especially online. Half of those people wouldn’t dare say some of the things that they were directly to my face either. Rather, they’d take comfort in saying it online by commenting on my posts and talking amongst their own group of friends, all of which shared similar opinions. It’s easy to do that when nobody challenges your narrative.

That’s part of the problem with the disability sector, too. Right from the top at Government, down to the community organisations, and even in some of the charities. There isn’t enough challenging of the cliche narrative that has existed for decades. There is no forward-thinking, and that leads to missed opportunity, because everything is so reactive. People in positions of leadership like to control and censor the messages about disability that go out to the wider community, but for so many of these people, they’ve been in the position for far too long that they’ve become short-sighted and too reliant on the same old systems.

You’ve got to own your opinions on things; don’t just say it because its popular at the time. The same goes for advocacy, and trust me, I’ve seen some so-called “advocates” in this sector shy away when the going gets tough and the knives are out. You can only be popular but so much. My gut instinct has always shaped my opinions and motivation to speak out of things, especially as a disability advocate. That’s why it makes it so easy for my critics, because they can easily question my actual knowledge on certain issues. But they also don’t see the countless hours of research, thoughts, and discussions I have about those same issues as well. That’s not convenient for their argument against me.

Where To From Here For Michael Pulman?

There are certain groups of people that will never work with me again, and it’s those same groups that I’ve got little respect for. In terms of “where to” for me in 2018… I am excited about what we at the Content Creators Network are doing. The TEAMPULMAN brand fits under that, and the beauty about it is that we are all just having conversations with one another. Unfiltered conversations.

Since launching late in 2017; it’s been a good run. Producing a live talk-show four nights a week is a fun challenge to have, and above all else, I love the interaction and the ideas that have spurned from that show.

The disability sector needs to become an industry. One that is progressive and proactive, utilising all modern forms of technology to work alongside the wider community. More detailed analysis about the hearts and minds of people needs to be had, and a National Register of disabled people actively seeking paid work needs to be undertaken. We need to be brave enough to broach subjects that go beyond just care, access, employment, and education. Those are biggies, I know, but these aspects don’t actually make up the structure of a person. Using the lack of advances in these areas and claiming that disabled people are at a disadvantage as an excuse is counter-productive and convenient.

There is little to celebrate about the state of our sector at all… really. A lot of it is nonsense actually.

I want to see a change in the narrative. I want to see people with disabilities in control of their lives in the present and the future. It’s them that should be making the policy decisions, them who should be leading organisations representing disability issues, and them who ultimately have nothing to lose and everything to gain by a big change in structure.