The Disability Conversation Must Be Open To All (Even Non-Disabled)

As a writer who occasionally attempts to delve into the issues facing the disability community, the argument of being allowed to speak about something is very real.

Whether spoken or not, the frequent rule is that your opinion only counts if you’re a part of something or afflicted by it. If you aren’t such, you should be cautious about what you say and cautioned before even saying it.

Attempting to simplify the complicated is a tough task because within that complication is often a subconscious reason and chain of history that led to it in the first place.

Five years of writing about disability issues such as funding shortages, leadership, service providers and disabled people’s sexuality has, so far, been anything but simple. It’s taught me a hell of a lot, but it’s always been a struggle.

In fact, I can’t remember a single blog or article that was simple to write and never has there been one that was simply received by what is a very complicated community. Continue reading The Disability Conversation Must Be Open To All (Even Non-Disabled)

Stop Trying To Control The Language About Disability

How a person with a disability chooses to talk about disability or identify with it is an important conversation, but it may not be one that will impact much change in the hearts and minds of the so-called ‘ignorant’ non-disabled. 

Language of identification seems to be a discussion that just won’t go away. This comes as no surprise, how people choose to identify is a deeply rooted and basic right, and the disability community is one that is constantly fighting to preserve the rights of its people, but the tension amongst some groups tends to boil over at times.

That tension can be counter-productive at times, and in the eyes of some, it matters little in comparison to other the discussions being had surrounding other areas of the disability rights movement.

The question then becomes, does it really matter how a person with a disability chooses to identify or talk about disability?

The short answer is yes, but it is everybody’s personal right to determine how they label their disability/condition/impairment in any space. Nobody should be told, especially by another disabled person, how to identify or what language is the correct to use when talking about issues impacting the disability community.

Within that community is a diverse amount of beliefs, some think of language and identification as ultra-important, while others think it’s an argument with no real depth.

Playing devils’ advocate for a moment, I’ve met plenty of non-disabled who often express to me their deep fear about language when it comes to me, ‘the disabled person’. They say that they are scared and don’t know how to talk about disability or how to approach it when confronted by it in public.

One person I spoke to this week about the subject of language and disability made some really good points that further confirmed a thought I’ve had for a long time about how the invisibility of disabled learners in school tends to aid the confusion and fear for non-disabled later in life.

“I’ve never had personal experience with disability at all, so how do I know the correct way of talking about it? Most of those kids were in the special unit at school and we never saw them.”

Some people I’ve spoken to had gone through their entire lives without ever experiencing a connection with a disabled person in any shape or form until having a conversation with me.

Can we really blame them for their ignorance? Of course not, disability is not an understood or desired part of mainstream society. The latter shouldn’t be a priority, disabled people shouldn’t be desired based on disability alone but they should be accepted as a part of the norm, regardless of whatever disability they have.

The words disability and disabled were mentioned four times in that last paragraph alone. It isn’t the word that is the issue, rather the thoughts associated with it.

Stop Trying To Control The Language About Disability

The point is that for those of us who experience disability, trying to control the narrative about disability is completely impossible to achieve. Furthermore, why is it our right to decide how we are looked at and talked about?

That’s where the ‘nothing about us without us’ terminology has real problems with me.

Some disability advocates want to have it both ways, change the labels and the language, as well as the thoughts that come as a consequence of it. But there is no certainty that the thoughts associated with disability by the ignorant will change, there isn’t even any proof that it would help a little bit.

Much of these conversations serve to make disabled people feel better about themselves, and perhaps that leads to the biggest question of all, why do we place so much personal emphasis on how we are officially described?

There is no real proof that a change in the official description would make us feel better about ourselves because it’s only ever been a discussion that’s occurred within the disability community for the most part.

The answer to increased participation and inclusion in mainstream society for disabled people isn’t found with how they choose to identify within or outside of the disability community, it sits with the ideals associated with the very sight of them, ideals that often aren’t triggered until being confronted by them.

For us, the disabled, trying to enforce a certain type of language doesn’t address that. Identify how you choose, do what you choose, but don’t expect everyone else to beat to the same drum.

New Zealand’s Responsibility To Empower Harder Disability Activism

A strong level of disability activism and the willingness to exert it should be a big responsibility for all interested in making real change

Activism (by way of a Google search) is officially defined as “the policy or action of using vigorous campaigning to bring about political or social change”. By its very nature, activism can be uncomfortable for many as it can disrupt many of the social norms (or the established way of behaving). 

Translating that to New Zealand’s disability community, what comes to mind about activism is it being an act carried out by the few, not the many. Disability has so often been referred to as something ‘special’ or ‘unique’, so then we should expect that it would be a good or well-behaved medium, which makes translating that into activism a real challenge. 

Advocacy (don’t mistake that for Activism) is strong in New Zealand and there are many people doing what they can to utilise their own platforms in a way that inspires others and creates a narrative about themselves and the community they serve. But as the narrative increases, so does the diversity of opinion about what needs to happen in order for disabled people in New Zealand to have their rights met.

Diversity is all well and good but when it becomes so noisy it leads to a weak level of productivity. Talking about a problem leads to an understanding, but simply understanding that problem only remains productive for so long before it becomes stale, and there is too much of that staleness breeding within the disability community currently.

Real acts of activism are limited to the brave few who often put themselves in danger of being removed from their own community in order to make the waves necessary to lead to a chance of change. Furthermore, what is deemed as the ‘right’ type of activism is so subjective that it divides many.

Compare that to overseas countries like the United States as the best example, established activist groups like ADAPT regularly take their local politicians to task over a lack of basic civil rights for disabled people. The strategies that ADAPT use in their activism campaigns have often included acts of civil obedience.

Don’t Believe The Lies, NZ’s Disability Activism Is Weak Compared To Other Countries (Even Now)

It’s hard to break down exactly why activism for the rights of disabled people doesn’t catch on as well in New Zealand. That’s not to say it doesn’t happen, but it is certainly lacking behind the example mentioned above. 

Firstly, the disabled population is significantly smaller, and secondly, New Zealand has no official Government legislation that protects and uphold the rights of disabled people, whereas countries like the United States have the ADA (Americans with Disabilities Act).

New Zealand, like many other countries, is required to work with the Convention on the Rights of Persons with Disabilities, and recently a report was sent back to the United Nations responding to over 100 issues found in how the convention has worked in this country. 

The easy answer is the difference in culture, but perhaps the real truth in all of this is a basic misunderstanding of what our human rights actually are. If you don’t understand those rights, how can you tell if they are being taken away?

The gross examples are, of course, recognised and acted on by both sector leaders and representatives.

Stories like the one of Robert Martin (New Zealand’s premier disability rights activist and a sitting member on UNRCP committee) aren’t unique or isolated, but they’ve got the power to capture the hearts and minds. Martin, an intellectually disabled man, was abused in state care institutions over the course of a 27-year period. He was influential in the shutting down of those institutions at the turn of the century and has since gone on to become the poster boy of the disability rights movement in New Zealand, and a major influence internationally. 

Empower, Invest In Activism For New Zealand’s Disability Community

But back in New Zealand, in 2019, attitude towards making change for disabled people still has a certain structure to it, and it’s one that desperately needs to change.

There seems to be an unspoken rule that in order to make a change, it must be done as a collective for the most part, where there is a general agreement that something is wrong and must be addressed.

The ‘mission statement’ or desired end goal can also be too general to understand and subsequently put the processes in place from a community perspective to make it happen (working together to put accessibility at the heart of a more inclusive Aoteroa New Zealand).

This is what makes for slower processes and ultimately weaker outcomes because nobody is really held to account more often than not.

Having established legislation and real consequences to not upholding it would empower a lot more people to have more gusto behind their questioning of why things are the way they are. Perhaps those people will be even more confident that airing their concerns will play a part, if only a small one, in making a change for the better. 

Again, the voices within the disability community are not silent, but they can be so much more empowered.

People will always be in situations where their rights are being taken away, nothing about that is exclusive to disability. As a result, there will always be a need for people from all aspects of society to be willing to challenge the structures that were put in place that lead to their rights being taken away in the first place.

Having a strong understanding (outside of just your own situation) and developing a voice that can be used outside of the traditional comforts of a group meeting or working group should be the responsibility for everyone in the disability community.

To not do so is irresponsible and it passes the buck onto the next person. There is already too much of that happening. 

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

With pay rates set to rise again for some in the disability workforce, attitudes toward the best ways of working need to rise as well. 

This isn’t going to be a blog that has all the answers, nor is it going to have excuses for what’s not working currently. Some of this will apply to support workers, other parts will be easy to talk about in theory. But if nothing else, this blog aims to talk about attitude and where it sits in a disability sector/community that is changing rapidly.

As a client receiving disability support services, some of these thoughts represent over 27-years worth of experience.

The outlook on whether or not attitude is improving through the workforce will vary depending on who you talk to and what their respective interests are. If you talk to many disabled people you’ll find that despite the pay equity settlement, something support workers deserve to a large extent, the quality of the workforce and services on offer aren’t exactly rising at the same rate.

If you talk to some support workers they will feel like their concerns aren’t being heard and that the needs of the clients they serve are given more attention. If you are a paid professional, a very big part of me would say that this is exactly as it should be. You chose to work in this sector, the people needing support didn’t choose to live in it. Some will attempt to place blame back on their own providers, or even more interestingly, some will say that the workforce is becoming too unfair because disabled people and families now hold more of the cards than ever before.

What I’ve noticed is that it’s often the smaller organizations that seem to grasp how to implement the principles behind choice and control in their service delivery and staff conversation. Despite that, these smaller organizations are often even more compromised than their larger, national-based organizations are from a financial and expertise perspective.

Those last two words being key… expertise and perspective. Not financial.

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

The success or failure of what new systems are trying to accomplish sit on the workforce to a large degree. Everyone needs to work together to make it better, but the onus needs to be on those getting paid an ever-increasing pay packet to sharpen up on what their actual role is.

I’ve long been a believer that a certain level of a certificate (and subsequent pay standard) that a support worker sits on doesn’t automatically confirm whether they are indeed a good worker or not. Being a good support worker and the requirements of achieving such are both subjective topics, but many would tell you that the best signals of it can be found in attitude.

The discussion of attitude goes far beyond just support workers, it’s sector-wide. The very fundamentals of what system transformation is built on is a shift in attitude. That takes a willingness to learn, to change, and to work together. These aren’t just three big buzz words that look good in policy or service design, they are requirements that if not met will mean that new systems such as Enabling Good Lives will ultimately fail.

The devil is in the detail (and old phrase I know) and many of the shifts in attitude we are talking about take place in the nitty-gritty, day-to-day, moment-to-moment interactions between the system and disabled people/families.

The financials mean little to disabled people and families, apart from them receiving funding packages that met their needs.

It is my view that disabled people and families should be aware of what their packages are, how much money is available, and absolutely, all the ways it can be spent whether directly or through a host.

The day-to-day stuff is what matters to disabled people and families, including the nature in which the support is carried out in those moments. It shouldn’t be their concern, worry, or even responsibility to be direct managers of that. If disabled people and families are capable and willing to take on this direct employer, manager, self-funder role then go ahead and do it but at the same time realize how vulnerable a position you could be putting yourself in.

For as much as the disability sector has talked about supporting disabled people through the process of being their own self-managers, it’s also done very little to address what happens when that goes wrong. I know that from first-hand experiences, bad first-hand experiences.

There needs to be some serious attention placed on attitude improvement through action. Leaving people in vulnerable managerial positions is an attitude of neglect. For support workers who have to work together to serve the needs of clients, not being a team player and having a ‘bare minimum’ attitude will lead to you having more and more performance review meetings, and ultimately your employment could be at stake, whether you resign or are terminated.

Think of it from a business perspective. If partners of the business weren’t pulling their weight or delivering on targets set, that partnership wouldn’t last long. The exact same principle should be applied in the disability sector because it is a business for many involved and the very best outcomes should be expected.

If these outcomes are not met, questions need to be asked as to why. A better attitude in the workforce is required, and less responsibility being put on disabled people to help deliver that.