Access by Various artists

Stephen Hawking radiated cool. He made nerdy physics cool. At the same time, he made disability cool, and synthetic speech sexy.  He was the outstanding physicist of his time. And because of, rather than despite, his communication impairment, he was also the outstanding physics communicator of his time, and perhaps all time.

His time has now run out.  Time was something he understood.  He wrote best selling books on it. At 21 he was given two years. Many disabled people live tenuous lives which can force the sorting out of what really is important. In the disability world, professionals fear giving false hope to disabled people and their families – in doing this they create the real problem  of false despair. He soon got over this. His life and his achievements were to be celebrated.

At the same time, he was able to make inroads into understanding  the forces of universal scale and sub-atomic scale, gravity and nuclear forces.  He was able to predict the theory of the Big Bang, and later the possibility of a Big Bang many times over.  He did pioneering work on black holes, and observed that they weren’t so black, radiating energy until they shrank to nothing. This radiation, called Hawking radiation, is a kind of black hole legacy.  He debated string theory with not-yet-out “aspie” Sheldon Cooper, and a theory of a doughnut shaped universe with Homer Simpson.  

I depart from many non-disabled commentators (and their gaze of inspiration porn) that I have been hearing since Professor Hawking's death.  He was never confined to a wheelchair or a communication device. He was enabled  and liberated by these. He deserves our respect, not our exploitative  praise born out of pity accompanied by inaction.    

He also had to be a pioneer disability rights activist. He had to fight for the simplest things non-disabled people take for granted – a home, the support to get out of bed, the access to move freely around the community, and the right to live.  He and his first wife Jane had to fight for support to raise their family, to get his support needs met in their home. They had to fight for the basics of accessibility to housing, places of education and moving around their streets and universities. They had to fight to keep out of hospitals. When medical professionals wanted to pull the plug, they had to fight against the professionals' assumptions about the value and quality of his life.  He lived another 30 years.

My favourite Stephen Hawking moment  in time is his comment on special schools. He felt privileged to not have been a disabled child and have never had his family persuaded or coerced into accepting that a segregated special school was the place for him. He compared segregated special schools to apartheid. Kids need to grow up and learn alongside the diversity that exists in all our communities. 

Entering a special school can be like crossing an event horizon: the point beyond which there is no possibility of a return to a good life in the community as an adult.  But then there is Hawking radiation.  The disability rights movement agrees with the special-schools-are-apartheid comparison. They will slowly die off, and through this we will learn from their legacy.    

Stephen Hawking leaves behind his own radiating legacy of hope in achieving both the greatest things through the power of his unique intellect, and the simplest things through the tenacity of small-scale disability rights activism. Maybe in our time we can all achieve the latter.

By the time the third panellist responded to my question about inclusion –about concrete actions to include disabled women – with stories about the disabled women they knew, or knew about, I was getting ticked. Very ticked. It’s something that happens regularly if the matter of discussion is disabled women, and here it was again.

Now there’s always a back story, and when it comes to including disabled women in women, it’s a WAY BACK story. You’ll know that disabled people in general have problems getting a fair suck of the sav – like for forever. And for pretty much as long as that, disabled women have struggled to be acknowledged and included within the category "women". It’s easy to veer off into this, but enough to say I could elaborate on the record of this for an eye-watering length of time. Back story of being invisible, being pushed to the margins established, return to the panel.

It was a panel discussion for the 125th anniversary of women's suffrage; Whakatu Wahine. The panellists were women from government, academia, media, community organisations: in short, well connected and presumably knowledgable sorts.

I got to ask a question. Well aware of the back story, as a disabled woman well connected to my community’s stories, my thesis was about our stories aching from the responsibility  I asked my question: what would the panellists do in their respective arenas to further the inclusion of disabled women who haven’t been or don’t feel included?

I have the stories of these other disabled women in my head, in my mouth, and we have been here before. In the asking, I described a disabled woman having the utter affrontery to ask about what the accessibility of the events would be (she is more or less told to do it herself if she wants it). Her experience is our shared everyday experience. It’s about far more than individual stories, my question, but it’s grounded in the accumulation of our oh-so similar experiences.

As the panel responded I began to simmer. I was told stories about individual disabled women, and about what happened to them. I was told the story about disability history. Government agencies set up for women and their work were described. I was to be congratulatory that there is a NZ Sign language interpreter at the event. Access forsooth!

There was no media acknowledgment of the pioneering work of Helen MacConnachie and Diane Stogre-Power. I was to understand there is progress, that they understand us, that they are onside. One of the panellists acknowledged my implicit challenge but mostly there are the stories about somebody else. And how hard it all is for us.

I know how it goes down at these occasions, and knew no reasonable response could be expected. So I did not pursue matters – on the spot follow-up, the attempt to pursue enlightenment, inclusion, justice comes at a substantial cost to the soul. I have spent a lifetime being an educational artefact, with little notable gain it seems. I was too tired of the stress, so I bottled up the wrath and went home. When the video feed went up on Facebook, I posted some of what I did not say. 

I said that the response was greatly disappointing, that we had any number of really bad social indicators of poverty and exclusion, that we were expecting a better reception than we were getting  from the women’s community and that this certainly didn’t merit a response of stories and "look what we’ve done" responses. I said that we, the women of the "edges margins and rocky perches ... who are surviving in the rocky outposts" expected better from them than anecdotes of what they know of some of us.

I also pointed out we’ve been in there, crutches, dogs, wheels and all, to push for our needs and rights. We’ve also been in there marching, signing petitions, lobbying, writing submissions, advocating for women’s issues for forever.  Now was the time for all to mean all and not have our access, our inclusion tacked on at the last minute or be told to organise it ourselves. We want to see ourselves in there and visibly representing ourselves, writing chapters, making keynotes, being part of panels, having research or podcasts or exhibitions about us.

I wondered what response I’d get. It came in two varieties: a tooth-grindingly patronising response from the Ministry for Women, thanking me for the sincere and thoughtful feedback – they appreciated my raising the issues and creating a dialogue. They invited me to contact them directly to tell them specific ways in which they could address my concerns. They were at least fairly prompt.

Neither a soothing cuppa, nor retail therapy could really assuage the incandescence this "sod off sweetie" response incited. And it didn’t help that nobody else-nobody responded to the post. The women I called to who were online didn’t utter a peep, choosing instead to talk about how super it all was, and weren’t there some good points about prostitution. Not until a small coterie of sound allies weighed in after a day or so, did anyone else say a thing in solidarity.

Here’s the thing: the Whakatu Wahine situation began from a standpoint of exclusion. The response and the silences of no-response said as clearly as can be that there is still a vast gap. The gap is not just in the access to services, to supports, to being  there, to solidarity, to inclusion; the gap is also, in the attitudes that "other", exclude, that dismiss and disvalue.

It’s not just an about me story. Every disabled woman I’ve told this to (and the aforementioned sound allies) has felt angry as did I. We know what it meant. And we are angry. It is the anger of disabled women who are sick of being ignored, being othered. We are waiting, but not at all patiently now. Don’t tell us stories about disabled women you know, don’t tell us our history (we know, and we were most likely there). Time for us to be part of all. Now.

I travelled to Wellington recently to meet with a few academics. I’m starting a PhD next year, so I needed to discuss my topic, my proposal and other logistics. It was very exciting for me and I always enjoy being in Wellington. It was my home for 10 years after I finished school and in many ways, it still feels like home so many years later. It was a very successful trip and I enjoyed myself, for the most part.

There was one issue that really took the shine off it though; every time I needed to use an accessible bathroom while I was out and about, it was occupied and on no occasion was the bathroom taken by a disabled person.

Of course there are instances where a disabled person might need to use an accessible bathroom who might not appear to have a disability at first glance, which is why it is important not to jump to conclusions about whether someone has a genuine need to use an accessible bathroom. Much like people who use accessible carparks when they are displaying a legitimate permit, people can be unfairly judged. There are many able bodied people though who reveal the information themselves, in their demeanour and their response, without any provocation, that they do not need to use a wheelchair accessible bathroom.

There is no law saying that if you are not disabled you cannot use an accessible bathroom. Indeed, some able bodied people believe they are as entitled as we are to use these facilities. Well, I am here to tell you, you are absolutely not. This matter is unequivocal in my mind. If you don’t have a disability, do not use an accessible bathroom.

There are two exceptions, of course: If it is a shared “parents’ room”/accessible facility, which is not ideal but not your fault, or if it is the ONLY bathroom available. In these cases, use the facility without guilt but be mindful of the time you are taking and whether or not you really need to use this space. I don’t mean to say you should ‘hold it’ until you find somewhere else, that’s not healthy. When you gotta go, you gotta go.

But if you are using the bathroom to freshen up your makeup, alone or with friends, or if you are using the bathroom for sex, alone or with friends, or if you are using the bathroom, alone or with friends, as a backdrop for a photoshoot for social media – Seriously, WHY do people do this?? – or for any other reason that doesn’t require a toilet or sanitary disposal method, GTFO of our damn bathrooms, already!

If you are using accessible bathrooms and you don’t need to be using accessible bathrooms, if you are sheepishly apologising, or worse, justifying using an accessible bathroom when you are not disabled, you should expect at the very least to be glared at. AT THE VERY LEAST. You know what? I’m all for diplomacy and cutting people a break when it comes to understanding disability. It… is… exhausting but I see it as the best strategy. On bathrooms though, nope. You do not get a pass.

If you are using an accessible bathroom and there are stalls available, or if you can wait for a stall to become available, it is a moral failing for you to use an accessible bathroom. You are saying to disabled people that you do not care about us and our most basic needs. You are saying to us that it is more important to you to get in earlier, or to have more space than you actually require, or to take more time in a space that is specifically meant for us as disabled people, than it is for us to be able to perform the most basic of functions.

There is no delicate way to say this: Stop using our bathrooms to take long and stinking shits. IDGAF that you’re trying not to stink out the stalls, or that you feel entitled to more privacy than the stalls allow. If you are taking a shit, it’s probably going to take a long time, in which case I might be waiting on the other side of the door for a long time. Frankly, the ‘courtesy’ that you have extended to stall users means that disabled people like me, who don’t have a choice about where we go to the bathroom, have to feel like we are suffocating in your stench. It’s not fair.

Accessible bathrooms provide more than features such as grip rails and extra space for mobility aids. Bathrooms that are usable by disabled people are essential so that we can be out of the house and living independent lives that don’t require us to travel home, or wherever we are staying, every time we need to use a bathroom.

You are saying to those of us who don’t have the luxury of being able to ‘hold on’ if an accessible bathroom is being used by you, a person who does not NEED this facility, that it is ok with you that we might piss ourselves, or worse, waiting. Many of us do not have bodies that work like yours. We have to plan so that we can avoid embarrassing situations that can actually ruin our day. The non-essential activities that able bodied people often use accessible bathrooms for take so much time that we have to weigh up whether we need to go in search of another bathroom in another building, which might be next door or blocks away, or if we should risk waiting, with no idea of how long you are going to take.

Lastly, businesses and public owned buildings REALLY need to stop locking accessible bathrooms, especially if it is not explicitly clear where we might find a key. Who are you keeping that bathroom pristine for? By the time we figure out who to talk to and how to unlock your impenetrable fortress, our day might well be ruined. I understand that such bathrooms are often used by homeless people and the state that the bathrooms might be left in could make them unusable for us anyway. I understand this because this is a problem I encountered a couple of times in my trip to Wellington.

It makes me angry, not because homeless people are using our accessible facilities but because there is clearly a need that is not being met by our communities, that is having a negative impact on both groups. It’s heartbreaking. When you lock homeless people out of accessible bathrooms without another solution available to them, they are going to find the next accessible bathroom that isn’t locked. Accessible bathrooms are not set up properly for the needs of homeless people who don’t have proper access to facilities needed for privacy and basic hygiene. This is a problem that needs to be addressed by our government and communities for the good of both populations.

If you are still in any doubt, be aware that every time a disabled person is waiting to use an accessible bathroom, and you’ve taken forever, and you open the door with some sheepish excuse as to why you are using our accessible bathroom that does not involve disability, that even if we don’t say anything to you out of politeness, or out of fear of confrontation, or just because we are exhausted at having to deal with this crap, we are all thinking the same thing: “Arsehole”.

Do better.

This is the last of the Disabled Persons Assembly’s (DPA’s) election blogs, and includes an overview of disabled people’s political participation, related questions for candidates, and a wrap up. 

For marginalised groups everywhere, increasing participation and achievement in political life usually precedes an increase in participation and achievement in economic and social life. Political tides turn when floater voters create waves and refuse to remain becalmed.

Over a quarter of New Zealand’s voting age population are disabled people, and yet we are extremely under-represented in Parliament, the ‘House of Representatives’. DPA eagerly awaits parties’ commitments to having disabled people as candidates high up on party lists.  ‘Nothing about us without us’ is an essential way of working on disability issues and inclusion, and it is a way to ensure that we leave no one behind in our society. 

In the past, parties entering coalition agreements have made gains for disabled people through law changes and resource commitments.

These were our questions:

What is your experience of disability or the disability community?

What will you do to ensure disabled people are better represented in the House of Representatives?

How will you and your party actively involve disabled people, including disabled children, in your work?

If you are elected, will you ensure your office and all meetings, information and communication are accessible to all your disabled constituents?

If your party negotiates a coalition deal, what of the DPA priority issues will you strongly negotiate on and advance?

Our comparative assessment on representational issues: the Greens do well on more issues.  The parliamentary Green Party, through Mojo Mathers, is the only one where disabled people are not invisible.

The Greens do better overall in DPA’s priority areas. However, the Greens' health policy, which supports legalised assisted dying, is a controversial topic in the disability community. The Greens appear to recognise the potentially serious consequences of legalising assisted dying for disabled people (and the potential flow-on effects on societal attitudes towards disabled people) and their policy promotes disability awareness to mitigate some of those concerns. While awareness raising is positive, some disabled voters may decide it is not enough and vote against the Greens solely on this issue.

ACT also has the legalisation of assisted dying as a priority, but do not appear to have given much consideration to its effect on attitudes towards disabled people.  This, and other bio-ethical issues such as selective ante-natal screening on the basis of disability, may over time increasingly shape floater voter choices.

The Māori Party have a great track record across most priority issues for a small party.  Labour has been a leader in the past, but in current policy rhetoric “encourage”  rather than “commit“ predominates and it suggests disabled people have dropped lower down their priority agenda.  National hasn’t given disabled people much priority in its last three terms, although there has been some good work done around preparing for disability support transformation. NZ First policies include a lot of promising rhetoric, but in government or opposition their focus has historically been limited to older disabled people.

On our assessment on the limited information available on parties’ policies on DPA’s priority issues, the Green, Māori, and Labour parties come out better overall, with NZ First next. Perhaps that’s a signal for disabled floater voters to disrupt the calm of the harbour, make the waves that generate a turning tide, with the current flowing centre left.

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www.dpa.org.nz

 The Disabled Persons Assembly (DPA) is a pan-disability disabled people's organisation that works to realise an equitable society, where all disabled people are able to direct their own lives. DPA works to improve social indicators for disabled people and for disabled people to be recognised as valued members of society. DPA and its members work with the wider disability community, other DPOs, government agencies, service providers, international disability organisations, and the public by:

• telling our stories and identifying systemic barriers
• developing and advocating for solutions
• celebrating innovation and good practice.

This is the fourth of a series of blogs from the Disabled Persons Assembly (DPA).   We have used DPA’s strategic areas of focus, as identified by our members, as a guide to examine key areas of each party’s policies. We have then asked questions that we would like answered from political parties.

Mental health, and physical health and well-being

Our communities, schools, and workplaces do not always value or include disabled people as they do others, and this impacts on our mental wellbeing. New Zealand has high rates of suicide. This not only includes people with long-term mental illness, but people with other impairments. People with psychosocial disabilities, autism or learning disability may be subjected to seclusion and coercive or compulsory treatment. 

Disabled people die earlier and have poorer health outcomes because of factors that are not directly associated with their impairment or condition. For example, New Zealand’s Independent Monitoring Mechanism reports that women with learning disability die on average 23 years younger than other women. 

How would your party positively influence the mental wellbeing of disabled people?

When would your party end seclusion?

How would it move towards ending compulsory treatment?

How would it reduce suicide?

How would it improve the health and life expectancy of disabled people?

Our comparative assessment: Mental health and the high suicide rate are receiving attention, with Labour leading the debate.  More emphasis could be placed on people with long term mental illness and other impairment types, and their rights within the mental health system.  No one has committed to a date to end seclusion or given a suicide reduction target.

Support and Living in the Community

Disabled people want to live in their communities, in their cultural contexts, and with choice about their own lives and control of their supports. Families want to ensure disabled children have the best start in life.

Having flexible and comprehensive support has been more likely in New Zealand if a disabled person’s support is funded through ACC, as opposed to the Ministry of Health. For disabled people to be able to live in their communities and direct their own lives requires transforming systems, connecting with more disabled people and families earlier, and updating support systems which have been narrowly focused on meeting needs that someone else has assessed, within a very tight budget. Options for family paid care are unreasonably limited.

Are there any rights or choices open to non-disabled people that you would deny disabled people? 

How would your party ensure disabled people and families realise their rights and choices?  

Would you consider social insurance similar to ACC a funding option?

Our comparative assessment:  While the 1999-2008 Labour government delivered for disabled people with its role in the development of the United Nations Convention on the Rights of People with Disabilities and the first New Zealand Disability Strategy, its review of long-term supports did not result in any reform, and there seems little further progress in Labour's current policy.

National came into power in 2008 on the tide of change of a Select Committee review of disability support, pointing to a need for substantial reform. The Māori Party has been the leader and innovator, initiating Enabling Good Lives (EGL), a progressive approach to support, choice and control. National have supported and continued EGL, with significant co-design and investment in preparing to roll out EGL across the MidCentral DHB region.

However, the pace of rollout could be improved through an investment in workforce development and ensuring adequate resourcing levels so that EGL can expand beyond the currently eligible group of disabled people. National here is an improvement on the previous Labour government's “review of long term supports”