The following is a full transcription of an interview with New Zealand’s Disability Rights Commissioner, Paula Tesoriero.
Michael Pulman: How are you feeling coming into 2020?
Paula Tesoriero: Well, I think we’ve got a huge number of challenges for the disability sector and in an election year, as always, it’s an opportune time to be talking about those in the public sphere. While we’ve got a number of challenges, I also think it’s a huge year for opportunity and so I’m feeling energized.
Mike Pulman: In 2019, there were some negative headlines, but it was a positive year in some ways with free public transport in some parts of the country and then Robert Martin. What was your reaction to that news?
Paula Tesoriero: Oh, I was just delighted to wake up to the news. I think that it’s been a real boost for the disability community. I think it’s also thoroughly well deserved. I think it really highlights for other disabled people, for the New Zealand public at large and internationally, actually, about what people with learning disabilities contribute to the world. It’s a really significant deal for obviously, Robert, but also for our community.
Mike Pulman: Yeah definitely, and I guess moving into perhaps a national discussion about disability, something like this is good to help inspire that?
Paula Tesoriero: Yes, I agree completely.
Mike Pulman: Moving into this year, an election, hopefully, there will be a lot of focus on this sector because it desperately needs some help. What are some of the areas you want to focus on this year?
Paula Tesoriero: I think that there is, as you know, and the people listening to this know, the list of things that we need to deal with as a country around disability are really significant so it’s always hard to narrow it down to a core group of things, but that’s the only way we make progress, I think. So the key things that I’ll be focusing on this year and in no particular order are the education reforms, as we know our education system is not inclusive and it continues to be a key area that disabled people and their families talk to me about so I’m going to continue the work that I was heavily involved in last year and continuing to make numerous submissions and hopefully influence the government to really use these reforms to deliver an inclusive education system. So that’s one area, the second area is that there’s a range of things that sort of set what I call loosely in a health bucket that I think this year we critically need to make progress on. One area is far better supports for people with neuro disabilities. Last year, I did a lot of work with fetal alcohol spectrum disorder community and really started to learn much more about the significant challenges faced by people who face day in their families and how that group who are not eligible for disability support services by virtue alone and having it face day fall through the cracks at so many stages. So, we’re doing some work together and with the Ministry of Health to try and address that, also with the Minister for Disability, she’s also in that package as is the system’s transformation work. There’s also the funded family care and changes that I hope we’ll see this year that vote on last year. Then there’s the level of funding for supports disabled people. So there’s not the total sum of issues in there and the health backup. We’ll be finalizing an independent monitoring mechanism. Our report to parliament in the lean on New Zealand’s examination in relation to the CRPD date. And you know, we’ve done a lot of work in the second part of last year, numerous hui around the country with disabled people and so I’m really looking forward to finalizing that in the first part of this year.
Mike Pulman: What was the general sense around the country in terms of what we are doing in that CRPD space?
Paula Tesoriero: The overwhelming take on the report is that yes, of course, there’s been some improvement in some areas and the government have announced some reforms across particular portfolios that impact the disability community. But by and large, there’s still quite some way to go across almost every article. It was pretty humbling to hear people’s experiences and get a sense of how frustrated they are while also acknowledging that there are some good things happening. Violence and abuse also, this wasn’t a topic that I made a priority when I came into the role but it’s become a priority for a number of reasons. One, I’m not satisfied that, with the current reforms underway, there is enough of a focus on disabled people. Secondly, I commissioned some work last year to pull together the information that we know domestically and internationally about violence and abuse towards disabled people. One of the key issues that disabled women raised was violence and abuse. So I then commissioned some further work right at the end of the year, which I’ve now received, making some recommendations about what I can do in my role to impact this. And then look, finally, it’s going to be a year with not only the election but the referendum on the end of life choice. We know this is something that I have talked a lot about. And, you know, I sort of welcome discussion on this. I’ve been very clear. I hope that my views about the safeguards and particular issues relate to this bill. So, you know, I think often the debate becomes whether or not we should give an assisted dying regime. And that’s not really the issue here. The issue here is this particular bill. And finally, and this is the real finally, there are a number of reviews that we made submissions on last year. So, for example, the mental health review, the Health and Disability System Review, Child poverty, etc and I will continue to be monitoring those and also having ongoing.
Mike Pulman: Sounds like a busy year ahead and I’ve got a number of questions about this. This work in violence, is it just in terms of relationships?
Paula Tesoriero: No. I think that one of the really important impacts for disabled people is that it’s not just about angles of domestic violence. It can be admitted into settings, community-based care settings, violence and abuse more broadly.
Mike Pulman: I guess part of a national discussion about disability, and the real benefit of that, is hearing from sections of the community that we haven’t even seen or considered?
Paula Tesoriero: I absolutely agree. I think that fetal alcohol spectrum disorder community is one such community. It’s a hugely dedicated group of people who advocated for years toward changes. We have a real opportunity through early intervention, through getting in and providing support for young people and the families to hopefully change their trajectory. I think that this is an area which, again, New Zealand doesn’t talk about the alcohol spectrum disorder in the way that we should. To date, there has been some focus on prevention. But actually, what we critically need in New Zealand now is a focus on support that people will get. That’s what I’m trying to support the community to do, to really focus the government’s mind on support for these people. But you’re right, we have a big opportunity to talk with different groups in our community and make sure that we all have a really good understanding of disability right across our sector.
Mike Pulman: I want to ask you about the End of Life Choice Bill. What would the percentage be between people you’ve heard from who are against this bill versus those who might support it?
Paula Tesoriero: I can’t really gauge that in terms of the general population. But in terms of disabled people, the people who have communicated with me by far overwhelmingly are against it. Very, very few people who have identified themselves as being disabled have contacted me saying they disagree with my point. I think what I continue to encourage people to do is really get to grips with the contents of this bill because my worry is that we will have a discussion this year about whether or not we have an assisted dying regime. Actually, that’s not the question here. I think it’s really important for the disability community to understand the specifics of this bill because if we are going to have some kind of regime in the future then we need to have one that is really robust and really safe. One where we have a way of guaranteeing that there won’t be wrongful deaths.
Mike Pulman: How did you feel going out an advocating so passionately against this? What was the experience like for you?
Paula Tesoriero: I think, you know, this role is a role where, you know, I do feel a weight of responsibility and that there may be times that shows. It’s a privilege to be in this role and so I take every opportunity I can to influence better outcomes, but this particular debate was hard. This seems to be an issue where people are not afraid to make quite personal attacks. My view on when you resort to making personal attacks is that it’s a way of not really engaging in the issues, so I had to just put up with the fact that there were some personal attacks coming my way and at times, as you know, on social media there can be some fairly brutal ones. I really see that those sorts of attacks are just people’s inability to actually debate the issues.
Mike Pulman: Ok, but what’s the plan if the bill does pass? What then?
Paula Tesoriero: I’m still working through exactly what I’ll do. I certainly intend to be part of the conversation. I will continue to say much of what I’ve said before around my concerns, around safeguards and the way in which this bill operates. I’m really focused on trying to enable disabled people to live good lives. All the challenges we’ve got this year, the end of life choice is a really significant issue for New Zealand. But ultimately, it will be one issue, one part of a series of things I work on. I’m looking forward to the public debate. I just really hope that all New Zealanders, and in particular our community, can focus on the substantive issues and not let this become a personal attack on people, because it’s not a way through this.
Mike Pulman: What was your reaction to the NZDSN report in late 2019?
Paula Tesoriero: I’m sure like many in the disability community, I’m really concerned. I think we have a really, really serious issue in New Zealand where a whole lot of things come in a way for disabled people that doesn’t enable us to leave these lives. If you look at the poverty stats, you look at the employment stats, you look at the educational outcomes, the housing situation, and then the issues around funding for sports, we’ve got a real issue in New Zealand where we need to support disabled people better. I think that that report really highlighted some quite significant issues. So like you, I was pretty concerned, I’ve read the report a couple of times now, and it’s something that, you know, we need to continue collectively working on.
Mike Pulman: Were you at all concerned that the voice of disabled people was missing in that report? Was there much consultation from disabled people because there were suggestions that it was very much presented in the interests of providers.
Paula Tesoriero: I don’t know in terms of specific consultation. I know that in my discussions with NZDSN have always been driven around outcomes for disabled people. But there’ll always be that tension and service providers can’t and don’t speak for disabled people.
Mike Pulman: Last time we talked, you said that we need to have a discussion and cost out what it’s going to take in order to develop a system that delivers. Do you feel we are any closer to that?
Paula Tesoriero: I think that we’ve got some way to go in having the EGL principles truly embedded across government. I continue to listen to disabled people’s experiences and I welcome people sharing those experiences with me. I think that what I saw, particularly last year was the coming together of a number of really significant disability-related issues in New Zealand. I think we’re at a point in time where there’s a far greater awareness across government of the issues. I’m not convinced there are solutions by any stretch. These are the issues facing disabled New Zealanders. Here is the evidence. Here’s what we understand. So actually, there’s an onus on the government to ensure that they are adequately addressed.
Mike Pulman: Yep. I totally agree. All right, well we’ll leave it there Paula. Thank you for joining me. I appreciate it. We’ll talk soon, I’m sure.
Paula Tesoriero: Thanks, Michael. See ya.