Conference Shenanigans

The end of May rolled around way too quickly. I felt like I finished my 10km in pretty good shape, but my body decided that I had pushed it and picked up a cold. I’d spent a lot of time trialling nutrition, hydration and recovery methods, before, during and after training. My legs and muscles didn’t feel too bad before the cold kicked in. Maybe the pace I set was a bit much with how easily I seemed to pick up that cold!

So, I was just feeling like I was coming right and we were off to the first of 2 conferences in a 3-week time frame. After doing something similar last year without support, I had a long recovery; so, having some room in my Personal Budget I decided to take a PA to these events and I am glad I did. Having someone else to help get food, wrangle luggage, take Raven for pee breaks, remind me to take my meds and some of the general running around of travel made a huge difference and although I was somewhat wrecked after the 3 weeks, I coped way better than I did last year.

June kicked off with the Cross Agency Rainbow Network (CARN) conference, which happens every 2 years. Sharon, from Police National Office, was at the Enabling Good Lives in Our Community: Safe Communities 2022 event and asked me to put in an abstract for 2023. The theme was around the strength in intersectionality and being a disabled and rainbow person, I seemed like a good choice, so I submitted 2 abstracts, one as a keynote speaker and one for a workshop. I was asked to present the workshop, so I decided to keep with my Rainbow Ramps theme and use the Enabling Good Live framework as a “method” for connecting with disabled rainbow people. I originally had planned to try and deliver EGL by stealth, but as a friend put it, “Antnz, you don’t do anything by stealth, you rock up and just do you.” so I leaned into that. After an initial discussion about reasonable accommodations, shout out to the CARN committee for coming through and enabling me to bring a Personal Assistant with me. Having Ann-Marie there made a huge difference. People see the cute dog and sometimes don’t realise that all the travelling, walking, wrangling luggage, worrying about falling over in the kai line, and making sure Raven has water and opportunities to go to the loo, can take a large toll on me. Having someone to handle a lot of the “small stuff” would have made recovery nominal if I hadn’t picked up a cold along the travels.

I haven’t spent a lot of time in Christchurch since the quakes, and I don’t really recognise the central city, the Cathedral used to be just around the corner from the hotel we were at. I really need to remember to actually get my camera out when I am travelling. I take it with me, and then I get wrapped up in what I am doing and don’t end up using it and if I was out tramping I would consider it dead weight. Knowing that travel can wreck me Ann-Marie and I travelled down on Wednesday the 31st of May in order to give ourselves time to get our bearings, have a meal and get an early night for my presentation on Thursday 1 June. Christchurch turned on the beaut weather for one hell of a kick-off to Pride month. The fabulous MC of the event Mary Haddock-Stanliard ensured that we were running as on time as could be, considering getting Rainbow people to anything on time can be like herding cats. No one was safe, including the Assistance Dog handler attached to the dog that had their photo taken with Mary during a break, who was late….. I should know by now I can’t “sneak” anywhere because sneaking is stealthy and apparently I don’t do stealth right?!?!

I was presenting one of the first concurrent sessions after lunch and I was somewhat nervous, but kind of relaxed at the same time. The first day after lunch is always a tricky slot, people take long lunches, or they doze off in the middle of the session. Hopefully, I was engaging enough to counteract the after-lunch snoozers. I had been asked to ensure my presentation was relevant to the Rainbow community and public servants. Being 25% of the population I believe all identity-based groups should do some disability awareness training, becoming disabled doesn’t discriminate between ethnicities, socio-economic status, faith, sports team, gender, or sexuality; anyone of us, or our family member can become disabled in a blink of an eye; relevant to the rainbow community: check. Head on over to the Enabling Good Lives Ojectives website, copy & paste the “government will” section into a slide; relevant to public service: check.

Coming from the outdoors industry I am all about practical examples and getting people to connect with the subject by doing something physical. In this case, it’s a bit hard to take a whole lot of bureaucrats out into the bush, but I wanted to show how, on a systemic level, New Zealand treats its disabled citizens. “Hey, can I get one in four of you to put up your hands?”, murmuring, confused looks, a few hands go up. “Are we sure this is one in four?”, a few more hands. “OK, cool those with their hands stand up for me”, more confused looks and murmurs. “Could those standing just make their way over to that (back, left of room) corner for me”; people start moving, more confused faces, more murmuring from both people moving and people seated. “OK, can you turn and face the corner for me.” Lo and behold the group in the corner actually did what I asked, “OK, how does that feel people in the corner?”. “Pretty shit”, “demeaning” and “humiliating” were some of the answers. “Ok please take your seats again. What I just did, is what we do systematically to hundreds of disabled New Zealanders every day”. Then my introduction. I also did my usual “the name of the dog is Raven, now you can stop wondering and concentrate on what I am saying” line, adding that I sometimes can get off track and that is one of the reasons I bought a PA along for this trip.

What I love about doing this work is the lightbulb moments, and when I learn something to add to my kete of knowledge. This time I took away the fact that, in the Rainbow community the “rate of disability” is slightly higher at 1 in 3 people. When talking about some of the barriers and the background to why some of the barriers exist, people were definitely surprised to hear that Plunket has a basis in eugenics. That New Zealand legislated segregation and in many ways, continues to segregate disabled people from their communities, was also news to some. I understand that people “don’t know what they don’t know”; however, I am always surprised at how little some people know about New Zealand’s history. To be fair I know that due to my work with the Royal Commission Inquiry into Historic Abuse In Care, I see some of the worst of the worst ways that our disabled tuakana have been treated. But the general ignorance around disability and accessibility always surprises me. For instance, I had a room full of public servants and only a few of them had heard of the Accessibility Charter, I needed to explain the medical Vs social models of disability in a few sentences and when I got to my “How does this apply to public service?” slide, it was not lost on me that it was a delegate from Whaikaha – Ministry of Disabled People who was amongst the first to take a pic. It was a good session going over some of the basics about what causes barriers and how to use the EGL Principles as a framework to remove barriers and connect with disabled Rainbow community members. I asked those in attendance to go back to their agencies and to make one change to better engage with disabled people, both as service users and employees. It is the first time I have actually used “Enabling Good Lives is really just a framework for how not to be a dick” as a summing-up statement, but it got such a good reaction that I must use it again sometime. (It’s Ok people I subcontract to, it will be an AntnzVentures thing).

After my presentation, I had some time outside in the sun just chilling when lo and behold I hear, “Antnz, bloody hell, is that you?” It was Shane who I had worked with when I served on the National Enabling Good Lives Leadership Group, he was cycling past on his way to another meeting. After a bit of a hello and a catch up, he was off again to his meeting. I am sorry to whoever was at the hui, it was my fault he was late, this time!

When I took a train to Wellington a couple of weeks later, I found that I must have made an impact; I was giving Raven a pee break at the train station before jumping in a taxi when a guy rushes up to me, “Hey Antnz and is it Mel?”, “Ah Hi, and it’s Raven”. “Ah yes, that’s right, I just wanted to let you know that I loved your presentation at CARN. I took up your challenge and I’m trying to get a couple of things happening at work. Like getting more material in different formats”. I was having a slight, “Is this actually happening moment?” so my response was an eloquent “Oh cool, what agency are you with?”, “Oh FENZ, um Fire Emergency New Zealand, hey I gotta run, have a great day”. Off he went, I got in my taxi feeling slightly bemused but kinda stoked that someone was running with something they learnt at my presentation. I enjoyed the other sessions I went to, there is a lot to think about in the social media space, it was good to see Connor’s mahi in the tertiary takatapui space and to hear where CARN has come from and where CARN could be headed in the future. Can someone send me an invite to the next conference please!?!

While at CARN someone asked me why they hadn’t seen me in the Rainbow advocacy space before, my response was “Well the fact that CARN exists tells me that there are enough Rainbow advocates, when I get invited to speak at a Cross-Agency Disability Network conference I will be stoked.” It was good to connect with the Rainbow side of my intersectionality as I spend so much time in the disability community space. Recently people in the disability community have asked me how the disability community could harness community strength like the Rainbow community did back in the 80s. Now that I have had some downtime to reflect I would say that the Rainbow community clearly got behind one specific change at a time, but because the scale of discrimination and systemic violence towards Rainbow people wasn’t as widespread across so many different systems and legislations that apply to disabled people’s communities. The scale of gaining traction in so many varied areas from health to justice, social development, education, business, housing, etc is immense and prioritising the work is going to be one of the hardest parts of instigating change. The other significant barrier is the wider communities attitudes and therefore, actions towards disabled people.

The conference was well organised, well timed, had a quiet space for those that needed it. The food was amazing, it was good to reconnect with some people, connect with new people and this was one of the easiest trips I have EVER had in regards to access with an Assistance Dog. The conference delegates were amazing at recognising Raven as a working dog when her harness was on and those who were around when the harness came off, well everyone enjoyed the pats and no one lost their lunch; which is always a minor miracle when a non-working Labrador is around. When Ann-Marie and I went out for dinner on Wednesday night at a Mexican restaurant, the staff looked at us, Raven, and just said “Table for 2? This way” showed us to our table, then promptly got a bowl of water for Raven. As usual, we got into a conversation with the people at the next table about dogs, turns out they were in town for a pet food conference. Unfortunately, the older gentleman had lost his own dog recently so Raven was making him miss his dog. As we were leaving I let him “Say Hi” with Raven, the poor guy was in tears. I didn’t mean to make him cry I just thought he might appreciate a pat and let’s face Raven will take pats from just about anyone! Our conference was being held at Te Pae, a beautiful and vast building, at the end of the Friday we discovered that the pet food conference was being held upstairs. I didn’t see the gentleman from the previous night but I could tell by all the gooing faces going past that they were animal lovers. As things were winding up on Friday, I hear “Excuse me, I have something for you”, it was the gentleman from the restaurant, who had a large handful of glucosime supplement samples, “I thought you might want some of the leftover samples”. Thank you, Christchurch, faith in humanity is restored.

I got home with a cold and knowing I had the Te Aorerekura hui on the 14th of June I took the week to recover and rest. I got a call from the Royal Commission (Inquiry into Historic Abuse into Care) to see if I had time to review a report, so I took the commuter train down to Wellington at stupid early o’clock. I was off to the Royal Commission to spend the day with some sobering reading. Some of this stuff you can’t unread, I did my best to ensure that disabled people’s voices and perspectives are accurately reflected within the work and put in a pretty full day. When I got out of the office for the day, I had an email that was really just another stage of what will become known as “Toiletgate” to some of us.

A few weeks ahead of the conference I had asked Ann-Marie to Google toileting spots for Raven near to Sky Stadium, but not finding anything she emailed the info@ address. The response was less than ideal: “The Stadium is a bit of a concrete jungle and does not have many areas in and around the area for a dog to be toileted unfortunately. Would it be possible for the dog to be toileted before getting here and then again after leaving (if it doesn’t drink too much water)? Will the attendee with the assistant dog be attending the conference all day?” Yes, they suggested dehydrating my dog for the day, as a responsible Disability Assist Dog (As defined by Section 2 & Schedule 5, Dog Control Act) user I am obliged to follow the Animal Welfare Act and provide adequate food, water and provide for their health and behavioural needs. If an animal is going to have adequate water, for their health they also need to be able to eliminate liquid. I heard nothing else from Sky Stadium until I rang them on the 12th of June. I did, however, let the Te Puna Aonui team know about the situation, giving the instruction “Can you please find me somewhere to toilet my dog” to a government official was not something I ever thought I would have to do. Another thing to add to the “weird but true” stories of being a Disability Assist Dog user. None of this situation is on the organising team at Te Puna Aonui, this was an issue with the venue.

Two days before the conference I decided to give Sky Stadium a call, I spoke to the same person that had responded to my email. I asked if there was any problem-solving done about a toileting space, as I was going to be there all day. The response was that they hadn’t come up with any ideas, did I have any? My ideas of “a small space on a side-line or a practise field” were quickly dismissed with “I’ve already talked to colleagues and they ruled that out”. The individual said they would talk some more with their colleagues and would be back to me by the end of the day. I didn’t hear back from them directly, but one of the conference organisers forwarded me the following “Had another chat with my colleagues over at the Stadium Trust and there is an area on Level 0 outside of reception that the dogs can go – I would be happy to show you where when you are on site. We just ask that the owners please clean up after their dogs; picking up and throwing out as necessary.” I thought that we had found a solution and that would be the end of the saga. That was not to be.

I checked in with the conference organisers, and knowing that they were busy I asked to see the person to show me to the designated area. As we were being shown to the area the staff member said “We’ve never had to deal with this issue before” as I was trying to say that I appreciated them finding an area. The option was right on the far edge of a car park, next to a chainlink fence, between 2 concrete pylons and it appeared to be concrete with shingle thrown over it. If there had been an accident in the car park there were no escape options. Another area that was indicated, was even further away than the option we were shown; considering ADNZ Raven provides mobility assistance, the closer a toileting space is to a venue the better. The language used by the staff member made me feel like accommodating my support needs was an “issue”, not a human right, being shoved to the back of a car-park, over-looked and again having to deal with disabling places and people was a bit of a reminder of the day-to-day underlying subtle violence that happens to disabled people constantly. Yes, every day, people using mobility parks without a permit, asking us to go get a key just so we can pee because non-disabled wreck or have sex in accessible bathrooms, making us use a ramp down the back alley, not providing alternative format material, or not providing visual descriptions of pictures, putting shop signs in the middle of the footpath and a hundred other things that non-disabled don’t notice. For so long disabled people have been shut away and not seen, it can be hard for people to recognise that a lot of things we do every single day actually put up barriers to disabled people to fully be part of our community.

I wrote to Sky Stadium directly with my complaint on the 22nd of June 2023, I had not heard anything on 19 July 2023 so I lodged a complaint with the Human Right Commission.

The theme of the conference was learning together, an appropriate theme at the moment with the Royal Commission Inquiry happening. It was a time to come together, to identify some of the issues faced in family violence and sexual violence space and to start and continue discussions of how we all work better together to prevent violence across Aotearoa. The violence prevention strategy uses the Tokotoru model to guide the work. This model has 3 key pillars; Healing, Strengthening and Responding. So when we think about the work we need to ask 3 questions; How do we help people and whanau experiencing violence heal? How do we strengthen people and whanau to have more resilience towards violence and better relationships within whanau to reduce violence? How do respond when people experience violence?

We had a great speech from Minister Marama Davidson about the origins of Te Aorerekura: National Strategy to Eliminate Family Violence and Sexual Violence and why this strategy is so important. I commend Marama for her strong advocacy, strength, and continued commitment to preventing violence across Aotearoa. In this year’s budget, we saw the work of the Safe Guarding Adults from Abuse framework and response recognised, this is the first time that this project has had allocated funding. I think this is a follow-on of institutional thinking and that if disabled people aren’t seen, it’s not an issue that needs to be addressed. For many, many years the work has been done with small grants, small pieces of contract work and uncountable volunteer hours by many in this area of work. To be funded to do this work shows a commitment from the government to reducing harm to disabled people.

The first panel of the day was about Healing from violence, and it was a good panel until the questions came in from Slido. The question “What are you doing for disabled men?” to the head of Tautoko Tane. I was disappointed with the response “We know this is a significant gap, it is on the list of things to do”, I felt like I was kicked in the guts; again we’d (disabled people) had been left out of the discussion yet again. Again made invisible because non-disabled don’t know how to start even talking to disabled people about their needs. I get it, some of the conversations are uncomfortable, we have to acknowledge that mistakes have been made. There is also the fact that some disabled people have had to be “public educators” for their entire lives and are well and truly fed up with not having our rights upheld and get a bit stroppy and don’t always react well to questions. I had to stand and challenge the response to the Slido question. I try to remain calm in these situations because I know that people “don’t know what they don’t know” and I try to educate but sometimes it all gets a bit much for me. When I challenge people around their thinking I try as hard as I can be to be Mana Enhancing while doing so. The panel video can be found here: https://www.youtube.com/watch?v=plEku96CyaM

By the time we got to the panel I was asked to be on, I was nervous, but having some whanaungatanga with the panel moderator and one of the other panellists definitely paid off and we relaxed quite quickly into a chat rather than a formal question and answer session. Although we had been sent the questions, and I had read them, I went blank as soon as I got on stage. I was almost cursing at the decision not to take notes with me. I had made the decision not to take notes because I knew that if I took notes, they would probably not relate to the situation after previous panels during the day, and that I had enough stories, indicators, and subject matter knowledge that I could draw on in the moment, and that I would go with my gut.

I had several key messages, but how I got them across wasn’t decided. My key messages were:

• Mainstream Family Violence and Sexual Violence services aren’t accessible to a lot of disabled people
• There is an appropriate response when an “adult at risk” discloses violence, know how to identify an adult at risk and how to use the Safeguarding Adults From Abuse response.
• There is a lot of underlying day-to-day violence towards disabled people through discrimination, microaggressions, invisibilization, segregation and ableism
• There is a massive gap in supporting family members who may experience violence from their disabled relative.
• Often violence in a household with disabled people is an indicator of underlying unmet support needs
• For the best outcomes for disabled people and their families there needs to be a cross-agency, coordinated response that in future should be nationwide.

I think I hit all my talking points, and by the end of my panel, I had several people ready to storm the pitch with Raven so she could pee. The video of this panel can be found here: https://www.youtube.com/watch?v=RtfHuqjuNA4&feature=youtu.be The playlist for the hui can be found here: https://www.youtube.com/watch?v=J98m6k_KwiY&list=PLskBZXCRzXXu6ENTCO7mhZpnQSPuCuetP

So June was a busy month, and with all the travel I wasn’t as consistent as I would like to have been with my rehab and training program. I have been taking my resistance bands & door stopper away with me, but finding the energy to get them out has been challenging, add in a couple of colds I have been running on almost empty. I have at least been keeping on top of my flexibility and doing resistance band sessions and taking additional walks as I have had the energy.

To start July I decided I needed a break from some of the Royal Commission reading, it’s heavy going, and it takes a toll. It’s important work and the survivors deserve to have their voices heard, but it is truly horrifying what has happened to people in supposed “care”. I needed some time to let go of some of the anger towards systems so I could get back to the work objectively. A lot of the work I do is because non-disabled want to do better for disabled people but don’t know where to even start the conversation about accessibility and inclusion of all diversity. I want to be able to share a bit of knowledge so all of society is better off, by having the skills, talents and contributions of disabled people valued as much as non-disabled people.

So in my usual fashion I needed some outdoors time to recharge, reflect and remind myself why I do a lot of the work I do. So I was Health and Safety manager for a group of just over 20 young disabled adults visiting Mount Ruapehu, that story will be a good start to my next blog.

Nā tō rourou, nā taku rourou ka ora ai te iwi
With your food basket and my food basket the people will thrive

• Category: Enabling Good Lives, Life on Life's Terms, Living My Good Life
• Tag: AntnzVentures, Disabled Life, Enabling Good Lives, Gimps Not Wimps, Less Wobbly Wanders, Life On Lifes Terms, Living My Good Life, Small Steps To Big Goals, Thrive Not Survive