'Going through the back door': Cecelia O'Dell reflects on disability rights in Aotearoa

Cecelia O'Dell (Te Rarawa, Ngāti Kawau) remembers the days when there was no ACC. Having recently retired from Te Kāhui Tika Tangata Human Rights Commission after working there for 34 years, O'Dell shares reflections on the progress of disability rights in Aotearoa. Eda Tang met her at her home in Hihi, Mangōnui. 

Read the transcript of the video below.

Eda Tang: You’re what we call a yapper these days.

Cecelia O’Dell: A what?

E: A yapper.

C: A yapper.

[Laughter]

E: Kia ora tātou, we're here with Cecelia O'Dell today, and we're in the beautiful Mangōnui. Cecelia, do you want to introduce yourself and tell us who you are? Nō hea koe? 

C: Kia, ora, Eda, Ko Panguru, ko Papata me Ohakiri ngā maunga. Ko Hokianga me Whangaroa ngā moana. I tipu ahau ki Panguru. Ko tēnā te ūkaipō o tō mātou whānau. Engari, ināianei i noho ahau ki Hihi. Kia ora. Ko Cecelia taku ingoa. 

E: Kia, ora, Cecilia, I believe you're retired now. Where were you working before and for how long?

C: I was working at the Human Rights Commission Te Kāhui Tika Tangata and I had worked there for almost 34 years. Because I used to be a shorthand typist before my accident. 

E: [chuckles] What's a shorthand typist? 

C: Oh, shorthand typist is when you take, when you take notes, and you write in shorthand, and you type it up and you present the documents to whoever needs it. And then when I looked at this particular position at the Commission, I thought, “yeah, I could pretty much handle that.” Logistically, I wasn't sure, because I obviously used a splint to write with. I thought I might need a typewriter, perhaps as part of the aids and access possibly was an issue. And how I was going to get from Manurewa to the city was also another big question mark. But I thought I'd figure that out later. It would come somehow.

So I started there as the inquiries officer. But I found the work really interesting, and in the inquiries role, you had to know the Human Rights Act — basically the whole legislation —  to be able to take the calls. And at the time, disability wasn't one of those grounds. But I basically found the job really fascinating in the sense that at the inquiries level, I could work across the range with all the different teams. So I worked with complaints, um, I worked with the lawyers, and basically you had to learn on your feet. So I enjoyed that job and then and when the position became available in the complaints team, applied for that. Didn't get it first time. Tried again, and I managed to secure the role. 

So it gave me a chance to explore what area I wanted to specifically work in. And then disability became one of the grounds when they were added in 1993 I believe, and extended that role. And then slowly, by slowly, the um, inquiries started to increase in terms of the number of calls.

E: So since 93 what have you witnessed improving for human rights for disabled people?

C: I think I felt that when the disability ground became unlawful, I noticed that it took a long time for people to understand what disability actually was and what was being required of service providers, employees, etc. And because — disability — it covered quite a wide range of circumstances or conditions, it threw a number of organisations into, I would say, probably, despair as to how they could possibly manage people with a range of disabilities. 

And also, I think the concept of reasonable accommodation wasn't clearly defined in the Act, the question around what was onerous and what was straightforward were big considerations for many employers. So I think the first perception was disability, and having to accommodate someone, was a costly exercise, and I still think today that we're still seen as a costly exercise.

But access wise, you know, I saw possibly more people being made aware, rather than complying with the law. I think when we looked at my experience of the Human Rights Act and the process that we undertook, [it] seemed a light touch compared to the Health and Safety in Employment legislation, because the penalties there were higher. So people were focussed more on ensuring safety, and that meant that when you're employing someone with a disability, the risk could often be quite high, and the penalties for an employer higher. So yeah, it was really a catch-22.

Admittedly, I did see some improvement around disability, but I think the hardest thing that I've noticed is around attitudes. I find attitudes would probably be one of the hardest ones to crack. Just the lack of awareness around the language we use and people's behaviour with us, all of those sorts of things are still a cringe factor for me. But because of the nature of my work, I think I've had to put that under the table  on many occasions.

E: What are you learning in your retirement at the moment?

C: [chuckles]. That there's still a lot more work to do out there, a lot more work, probably more so than anything, and I think probably this has become heightened by the fact that I'm more aware of the law and what people's rights are. Yet I understand why people don't complain. I completely get it. So yeah, my senses have become even more heightened, and I'm finding that I've moved from the impartial role to the advocacy role, because it's bloody exhausting to keep fighting without actually being aggressive about it and we're still having to be nice about it.

E: Now you can be a little less nice.

C: Yes, a little less nice and a bit more assertive in that area.

E: Yeah. 

C: One of the tensions we might have is really to balance that with a level of co-operation with the parties to change for the better, rather than be aggressive or overly zealous about the whole process. It's about trying to get people on board, building a relationship with them to help make a difference, perhaps. 

E: So you’ve still got a lot of energy now. What are you putting that energy towards?

C: Ah, I guess I'm thinking about how I tackle the awareness aspect of it at this stage. I felt that I needed to start with my own community, my own whānau and the local schools around, etc. Perhaps telling my story, my own experience and maybe getting in there at that level. 50 odd years ago, I was there, and I'm here, and things haven't all changed that much. So I'm here again, knocking on the door again, to say: "Get your act together”, because we're ageing. It's going to affect a member of your family at some stage of their lives, we have to wise up about it at some stage.

E: When you talk about starting with your own people in terms of the awareness piece, is there a difference between how Māori might understand disability compared to a more Eurocentric perspective?

C: Yes. I believe so. I could be wrong, but that's my experience of it. And I think because we come from the basis of aroha and manaakitanga, that invades our whole space. I understand it, I’ve lived it, but for someone with a disability, it can be suffocating. And I think that in itself has been one of my barriers for a number of years, and I guess my reluctance to move back home to my own whānau and people, because I've just found it hugely difficult to navigate, I guess. 

At the end of the day, it is coming from a good place. It's culturally appropriate, but it's still suffocating. And I think we have to get our heads around the fact that they need to ask for it. You've got to empower people, rather than basically look after themB Because that way, it's a huge area of disempowerment for many of us. It just basically stops our development.

E: Yeah, so it sounds like, you know, in the western, especially with the social model of disability, it's all about emphasising one person's agency and their own independence, whereas, you know, within more collective cultures, it's ok to rely on other people, yeah? So those are in like tension with each other?

C: Exactly, yeah

E: Yeah, yeah. 

C: It is. It's a really interesting dilemma that you find yourself in. I went home to tangi recently, — it was — one of my first cousins, and he was one of our last kaumatua back home. And he was always there. And then all of a sudden he died. You know, who are going to, who are we going to rely on when we go home? So I went home to that tangi, and I really wanted to go on to the marae to acknowledge him. But I couldn't get into the marae independently.

And I was quite insistent that I'd be there. I'm going to sit there and be an example. But then I decided against doing that, because I didn't want to hurt the whānau’s feelings or anyone else’s feelings. I know some whānau had heard about my reluctance to go to the marae for that reason, and they were quite happily ready to lift me into the marae, but it just didn't feel right to do it that way. So that's the kind of dilemma that I find myself in on many occasions. Yeah.

E: What's your vision for disabled people living in more rural places?

C: Sounds grim. It's pretty grim for me, I find.

E: Do you have everything you need here?

C: I think resources no, and the way the Coalition's going, the resources for disabled are being cut more. And we are low in resources as it is, because in the rural area, you've got to travel. And getting the right person to do the job, you probably are looking at a distance for them to travel.

There's travel that we can give, but that's our budget that we're given to actually manage that. And I find as I go further back into areas like Panguru, we've got some support workers who are going from Panguru to Pawarenga, which is probably, maybe three quarters of an hour, hour-drive, perhaps. It's on metal roads. So I'm just trying to figure out how on earth people in my certain condition would actually be able to access those resources, and the more they cut back, the less options I would have to be able to do that.

And I think that also comes with age as well. The older you get, it seems to me, the more they reduce your resources, because you’re perhaps seen as no longer an active member of society. And there are a number of things that I need that level of support. And it has to be paid, otherwise you're not going to get that support worker to stay. They would go off to a client who is an ACC client, and already the bar is lifted because of their higher rate of pay. I don’t know, I just see it as pretty grim at the moment.

E: Yeah. Among all of these things that are contrary to what you're working towards, how do you, you know, maintain your hope and energy and you keep doing the thing you're doing?

C: [heavily sighs]. At the end of the day, I came to the conclusion fairly early in the piece going through the rehabilitative stage. I watched ACC clients, as opposed to clients like myself, who were on the health sector budget and the whole difference in the type of resources we all received. 

The fact that I was on the health sector budget, it probably made me more determined to get a job. And I was very fortunate that I had an employer who created a job for me even after my accident, and I was able to get back into the workforce relatively early. I've had the opportunities given to me in that way. I've had the support of my family. I've been fortunate enough to meet a guy and become married and live a supposedly normal life, even though I'm struggling to define what's a normal life these days, and you either decide to take the low road, or you take the high road. And I can't, I've been down the low road, and it's… yeah, it’s only one way out. [pauses]. Yeah, I've been down that road. I've been down there. I've been there. I’ve thought about it, seriously… seriously thought about it.

I guess for me, when you look at someone else, or in my experiences at the Commission, we carry very heavy loads as mediators or complaints officers, where we hear people's stories, and people trust us with those stories. And they're very heavy, just alarming stories where people have reached the bottom. I guess that’s how I look at life, it’s kind of like… while people may not see it or perceive it, I’m fortunate. I’ve got a house, I’ve got my resources. You know, I've got what I need right now.

E: I still like to feel sorry for myself, though. [grins]

C: [laughs] It's actually ok too, to feel sorry for yourself! Yeah.

E: What does working look like in your retirement compared to when you were employed?

C: I think working for me looks like being involved in the community in one way or another. But being selective, probably, more selective about where I may choose to work. I mean, I already have ideas, and I think for me, it's actually remaining active, either brain-wise or, and physical. And again, that's going to be reliant on my resources I have right now. So I guess that's something that I'm still exploring. I haven't quite figured out how I'm going to get into marae back home, or local community. That's another area that I need to explore how I might do that, and whether – what opportunities arise for me to be able to do that, and then with schools, etc. 

E: You know, when I think of retirement, I think of not working and just sitting all day.

C: [laughs]

E: I mean. You're a very gritty person, even from the beginning — Where did that come from?

C: I think it's my upbringing. My mum and dad were disciplinaries, and work ethic was really key in our household. You know, I come from a family of seven siblings, so there were eight of us. And there was never a moment when we could just sit and be, except when we were doing our homework, of course. Holidays weren't what you'd call a holiday; you would be working on the farm, or you'd be finding some form of external work to do or help dad if he had external work to do, or mum.

For me, the word retirement and being redundant absolutely blew me away. And I think that's probably what I fear the most: ‘retirement’ equaled ‘redundant’. And I'm really semi redundant now, what on earth could I do with my life out here? So I guess that's the kind of journey that I find myself on as to exploring what opportunities might still be out there for me.

I am also enjoying the option of reading without having to feel guilty about not working or being at my desk at a certain time all day and not having sleepless nights anymore. I never, ever anticipated it might open up another world, perhaps, and I'm hoping it still does. I guess that's something that I'm exploring and will continue to explore, because I can't, for the life of me, think that I'm going to sit here, because I'm going to feel sorry for myself, I damn well will. 

E: Yeah. What was it like when you know, before your 20s, you had that high work ethic drilled into you, and then having an accident? That must have been really tough, right?

C: Yeah, it was tough, because I had no choice but to leave the farm. My siblings went off to boarding schools. Some of my siblings went off to trade trading schemes. And I refused to do all that, because in my head, I was going to stay on the farm and run the farm. And then mum decided that there was no way I was going to do that. 

She wanted me to explore better opportunities out there, and she didn't want me marrying all my cousins down the road. 

She wanted us to make use of those opportunities out in the real world. And I think there's a lovely old saying by [Apirana] Ngata: grasping the tools of the Pākehā world so you can go out there and, and make something of yourself. And I've always thought about that, but I think in doing that, I feel that I've had my own identity ripped off me. When you leave a small Māori community, rural community, and you're brought up amongst all your whānau, you leave that behind too. And I felt kind of cheated about that, because mum and dad pushed for us to be educated. 

And in those days learning te reo, or speaking te reo wasn't going to get us anywhere. There was no future for someone who spoke te reo. Whereas if you spoke good English and you competed with the rest of the world, the world's your oyster, so to speak. I'm not sure I found that, and then after my accident, I guess I stumbled there for a long period of time because I knew where I wanted to head back, and that door was closed to me. 

E: How visible were young disabled people in your time?

C: Umm. Probably not.

E: Did you have a community at all?

C: In the community in Panguru, I don't ever recall anyone who's a wheelchair user, who's blind, and if they were, maybe they were kept at home or looked after. They were looked after in the home. One, they couldn't get out. Two, they were whakamā. So there would have been a number of reasons if there weren't any, and three, the whānau just looked after ya. In other words, you were there to be looked after. You weren't there to seek any other opportunities out in the world.

And I think when I first started off on the disability awareness route, I used to go to marae, not my own, other marae — was safe I felt. I always had to go through the back door, and that was a perfect way to break the ice. And I would say to them, “When you first saw me, what's the first thing that came to mind?” And they were really whakamā about it and I'm saying, “Be honest. You know, I'm not going to be offended. I believe I've heard it all. Maybe there's some I haven't yet.” 

And um it wasn't unexpected, because they'd come out with, "poor thing", "cripple", “my gosh, what can you do?” And so there were all these typical, stereotypical terms, and I think that still exists to some extent by our people. and I think probably with the younger generation coming through now, they are certainly a lot more wise and worldwide about that. But that doesn't necessarily influence the changes we still need in the community, I guess.

E: There's a certain irony in thinking “poor thing” for someone who's actually out in the community and has managed to leave the house, you know? 

C: Yeah, yeah

E: Those are the actually, the more lucky people

C: Yeah, I've come all the way from Auckland down to talk to you, and that's the immediate perception.

E: Poor thing.

C: Poor thing. And you bring me into the back door. You know, manuhiri is supposed to come through the front door. How do you think that makes someone like me feel coming through the back door?

E: Yeah.

C: I'm not welcome in the same way that everyone else is. And this is not my marae. 

E: Yeah. 

C: So it is, yeah. You can cry about it. But I think probably over the years, I would have shed buckets of tears if I cried about every incident that occurred, really. So you either cry or you laugh about it. And so I tend to probably laugh about it and clock that in my head and think, “hmm..”, this is another learning or barrier I'm going to have to overcome. Yeah.

E: If you had another 35 years at the Commission, or just 35 years in general of whatever work you want to do for disability rights, where, where do you want to see us end up by 2060?

C: Phewf. Big ask. I'd like to think that — and I guess this covers all the grounds, but I think in particular disability — I'd like to see us not having to continually ask and educate people or make people aware of what our needs are. I still find service provision and employment and even accommodation, we still have to ask and we still have to challenge. I guess for me, compliance is not high enough there. 

I guess I'd like to think that it would become automatic for people just to look at not us as a problem, but to actually see this is all simply cradle to the grave stuff. If we look at it in that way, you are trying to accommodate all of the stages of our lives. And I think for me, that would make it a better world, if we kind of work from that basis. But I guess now that I've left the Commission, I’m finding we still a long way from there, really, yeah.

E: When you say, “accommodating from cradle to grave”, is there any difference between disability for something that you've acquired or were born with, versus ageing and having an age-related disability?

C: I think probably because of my lived experience of not having a disability— again, people's perception of you change. Because all of a sudden you're put into a different category. And you're not only considered ill, sick, disabled, you're now ageing, so you automatically go into the ‘kuia’ status. And I don't think my head's quite there yet, so I think that's the difference. It kind of feels wrong to be perceived as someone who's old, because my head still thinks young, really, I guess. But then, I know that there are limitations that comes with age as well.

E: Yeah, yeah. Possibly, like, if disability was accommodated for for everyone you know, people who acquire age-related disabilities might be more gentle and accepting of those.|

C: Yes, yeah. And I think the language itself  would be helpful, because, you know, you still get comments around people who perceive as — they see us in the medical model — and comments like “you look so well.” And I always want to say, “considering what?” or, “I'm actually not sick. I'm just paralysed”, you know? So I always find myself wanting to react, and I'm having to pull back because it's coming from an ok place. It's coming from a good place. And people don't mean to insult you, offend you, so you have to kind of just be careful about in what context that's being said. 

E: Yes, can be quite exhausting, though.

C: It can be really exhausting. When I was working as a mediator at the Commission, things like that went over my head, and that was for professional reasons, I guess. And now that I'm in the outside world, I guess it's still damn exhausting, having to continually make people aware. 

Recently we went away, and I was looking for accessible accommodation down in Tauranga, and very few places advertised as being wheelchair accessible. And of course, when I did find the odd one that did say that they were wheelchair friendly, it's almost like they were reluctant to put it into their publicity. So I'd ring up and enquire about what they mean by “wheelchair-friendly facilities”. And the minute they start talking, I'm feeling myself like wanting to, "so what do you mean by that? Can I get into the building?" "Oh, there's a step. There's a couple of steps here." Ok, so when I get into the building, there's a shower, is there a roll-in shower? "No, there's a lip there, or so, just a little step."

I've gone through kitchens, I've gone through all sorts of buildings where we've gone through the back, through the supply lift and all that, and we're still doing that. It seems absolutely strange. Why can't they put up access in the front door like everybody else, so that we can go in like everybody else? 

E: Yeah. How do we address that at a larger level? Is it a compliance thing? Is it an attitudinal thing?

C: I think, unless it's a class type complaint, you get many, many people echoing the same or screaming the same song, it might make a difference. But because most of our complaints that came in were from individuals, so you can work towards resolving that particular person. But at the same time, we're always looking for systemic outcome, because what might resolve it for you, will resolve it for more people.

E: Absolutely

C: And that's generally the focus of what we want to do in the mediation sector. But people may follow through for a little while, and then goes back. It goes backward again. So you feel like, “haven't we done this one before?” 

So I'm not sure how one actually gets beyond that at this stage, apart from making the penalty a bit higher, maybe. And for that to happen, maybe cases need to go through to the tribunal to get a decision, a legal decision, rather than resolving them at the level that we resolve them. But even then, that's the reason they brought that particular process in to try and get a resolution. The bonus is with a systemic outcome.

E: Yeah. It’s a long way to go. 

C: Mm.

E: Well, thank you so much for sharing all of your stories, and it's really great for us to learn from your experiences over that time, and to know how far, but also not that far, we've come. So thanks for speaking to us, and we'll keep in touch. 

E: Kia ora. 

C: Kia ora.