Valerie Smith
===

Pam: Valerie Smith, it's wonderful that you agreed to talk to me on this very first Disability Disruptors podcast. How about you start off by telling me a little bit about yourself? 

Val: Well thank you for asking me. It's hard to know where to start. I am 66 going on 67. I've always had a disability. I haven't always been involved with disability I came from a family with an older sister.

They didn't, my parents didn't find until I was about nine months old that I had an odd disability called Ehlers Danlos, which is a collagen deficiency. And it affects my muscles and strength, and over time my spine curved and my ribs curved. But I went to an ordinary play centre, an ordinary school, very much the only child with a disability.

And I had a good, wider family and eventually, realising I wasn't strong and couldn't do, strong things, I went to university and got a degree and then thought, well, what now? I'd worked very hard to get a degree. And so I ended up becoming a librarian and then later doing some further research and eventually being involved with the disability rights movement. But that's a bit of another story. 

Pam: We'll get to that very shortly. What was your degree in Val? 

Val: I did history, I loved history and I did political science. I've always been interested in both of those subjects. I did other things as well. 

Pam: So political science, that would have been really helpful when you moved into the disability advocacy area.

Val: Well I suppose it was. I've always taken the larger view of politics and being quite political without getting actively politically involved. But all of those things are useful. And eventually after my first degree, and I worked as a librarian, and then For my first degree, I'd had a scholarship to do honours or a Masterate.

I went to Massey, but back to university. I was then living in Palmerston North. I'd been brought up in Christchurch, but I was living in Palmerston North. And I did honours in history. And I came up with another scholarship, to University Grants Committee scholarship. And I didn't do something immediately in that. But by that time, I'd got more actively involved in disability in a very roundabout way. And I decided to combine my love of history and disability and I was going to look at the organisations concerned with physical disabilities in the interwar period, New Zealand and Britain. So that got me to the London School of Economics for a year, that was the little perk of the job.

I wasn't particularly successful in my PhD because I probably was too broadly interested, didn't refine it, didn't have a good supervisor, really didn't want to be an academic. So at about the age of 30, I thought, why am I doing this? I was back in New Zealand. I was doing this degree actually from Otago University.

Having been at Canterbury University, then Massey University, and finally at Otago University, and I ended up wandering into a more active role in disability. But that's another story, yet again. 

Pam: Yes, well we are still going to come back to that. But I'm just really interested as well, in your experience at the London School of Economics, both in terms of the papers that you were writing, but also just living in a completely different country, in a different city.

How did you get on? Did you board? What was that experience like? 

Val: Well, actually I wasn't doing an active course of study there I was just more or less having supervision from the London School of Economics and I could use their facilities. When I knew I was going to Britain, I contacted a Kiwi friend, as many living in Acton, and she said, Oh, come and live in my flat.

Now by this time, I could never really manage lots of stairs and I didn't have the courage to say to her, are there many steps and stairs and I arrived off the plane at about seven o'clock in the morning Heathrow and I get to the flat and it's a crumbling house in Acton third floor. I thought, my God, how am I going to cope?

But I've always been one for a plan A, plan B, and plan C. And I'd actually from New Zealand asked if there was hostel accommodation at the London School of Economics. After about three weeks, I realized I couldn't cope living in Acton and it was just too stressful on and off buses and everything and the third floor apartment, a crummy flat.

And I managed to throw myself on the university and there had been some recent renovations at a place called Passfield Hall in Tavistock Square, which was about a 10p bus ride from the London School of Economics. And I was halfway through the academic year, and I managed to get a room, a portabin, as I've often talked about.

It was so small, but it was on the ground floor. And when you walked in, there was a bed and a wardrobe And if you opened the door of the wardrobe, you couldn't get past the bed. But it was fully catered, it was cheap, and it was fantastic, and I was there for seven months. And then later, I had to do some field work, and I ended up in Nottingham, and I ended up just fortuitously finding board in Nottingham for three months.

So When you have a disability and are not particularly strong, you have to be adaptable, you have to think ahead, but, you know, sometimes naivety has led me into things that I've taken on and somehow or other I've coped, although I've always tried to think ahead, but, you know, being a student in the likes of London was not 

particularly easy.

Pam: No, I can imagine. Just moving along to something we've said we'll come back to a couple of times, is your involvement in the disability sector. Tell me about the various roles that you've had and how you got into that I guess. 

Val: Well first of all I have to tell you that I never really thought I'd ever get involved with disability.

I had nobody in my family had a disability apart from me. Nobody at my primary schools and only one girl at my secondary school. And So, I really had no friends in the disability world and didn't really have much interest. My memories was being involved with crippled children's society in a peripheral way.

A social worker would come once a year or a field officer and say to my mother, You're coping, aren't you? And mum would vaguely say yes and she would walk out. 

Pam: Sounds familiar. 

Val: Sounds familiar. Yeah. And, I didn't really have any feelings or whatever about disability. Occasionally CCS would send me tickets to a movie theatre, or once when I was 13, we were given a parcel of make up. And going along to the movie, I was with 50 other kids with a disability, and 4 or 5 other demented caregivers, and I just hated it. Because I was not used to being with them, as opposed to who am I.

So, you know, my identity, I struggled through university. I was on crutches after a major operation in my teenage years, and I was terribly isolated. And if anybody asked me to go somewhere, I would turn it down because I thought they're pitying me. But anyway when I finally had gone to Palmerston North I'd done my honours in history.

And I was applying for librarian jobs, because I was a librarian, in places like the Librarian of Inglewood. And I had a bit of spare time. And I walked into the Palmerston North display area in the middle of the square that a woman called Jenny Darby as the city recreation officer had put on and it had about equipment and I was vaguely interested and I saw this pamphlet Which was about the Palmerston North Coordinating Council.

I dunno whether it was a disabled or handicap. Now you've gotta remember this is 19 76, or 77 well, I'd never heard of these things, so I thought, oh, I'll contact this organization and see if things are less patronizing than my few encounters with disability. 

Pam: Mm-Hmm. 

Val: And I went along. to see a woman called Dr. Norma. Oh, I can't think of her surname, who was a South African doctor at the rehab center at Palmerston North. And I said, look, I'm vaguely interested in what's going on, what are you doing? And she sort of seized me and she said, look, I've got $1, 500 to do a house to house survey of disability in Palmerston North and she said can you help? And I said look, I don't have stats, geography, anything useful like that, but look, I've got a few weeks, I'll try and find some funding source because you're not going to get very far with $1500 dollars.

Even I knew that. So I drew up a list of about 12 sources and at the top was the Labour Department and I went along and I said look, these people are trying to get some money to do a house to house survey, they need people on the ground, what can you offer? And I walked out of there in a daze as a temporary employee to get the survey off the ground.

This is a bit of a byway, but it's the way my life has always been serendipitous. So then somebody told me that it was the first year of student temporary employment or something over the holidays. And you could apply for funding for schemes to employ students. So I put in an application for 10, 000. Complete bullshit. I went off on holiday and I came back from Christchurch, my family, on the 10th of January to a letter which says, Congratulations, you've got 10,000, well done, and you have to spend it by the 30th of March, or the 30th of February, I can't quite remember, of this year. This year ! So, I got in touch with Jenny Darby, who was the city rec officer, who had a boyfriend who was at the geography department, and we became co coordinators of the house to house survey in Palmerston North, and we put an advert in the paper, and I employed 30 students. And Jenny's boyfriend developed mesh blocks and off we went and we did a house to house survey.

Well, I was waiting to get a job such as librarian at Inglewood, but somehow or other I got quite interested in disability and this being thrust into it. And I never fully went back to being a full time librarian. I did do Junior Lecturer for six months, and then later I went down to Dunedin to do my PhD, which combined history and disability.

And honestly, I sometimes worked in a library from then on, part time. But largely, my life took a different course. I never returned to being a full time librarian. At times I've used my history. But then one thing led to another. I've had a completely unplanned career. But it's been very interesting because it coincided with the birth of the disability advocacy movement, the consumer rights movement.

I was just there at the right time, stumbled into things. That's it. For example, when I was doing my PhD down in Dunedin and I was bored just studying I went along to CCS and said, can I help out in any way? And I used to take some people once every two weeks, get a van and off we'd go. And we went all over the show looking at natural history and that because a couple of the guys were interested in it.

And then at one point I was running out of money and interest in my PhD, and I went into the foyer of the hospital and there was a disability information desk there run by volunteers. So I offered to be a volunteer. It was called then the Aids and Information Centre, don't you love it? And the occupational therapist who ran it was called Gay Ball.

Yes, so anyway, she and her husband were shifting to Central, he was an artist. And so the part time job was advertised and she said to me, well why don't you put your name forward? So I applied. And after six weeks I'd heard nothing. So I phoned up the head of community service, who was running in a sort of NGO capacity, this little information service.

And I said who got job? And he said, oh, didn't I tell you, you did. So I ended up running a disability information service. And that then led to stumbling upon DPA. And my life just sort of went from one serendipitous thing to another. And so I've spent most of the last 30 or 40 years in one way or another working for disability.

I ended up coming to Wellington. I applied on the last day to be communication and regional liaison person for DPA and came up here about Wellington about 93 and then a couple of years later I worked for the National Health Committee disability advisor for a year and then I stumbled into disability support services and worked for there for 17 years.

And then left. And three years before I was 65, I stumbled into working for disability, doing some supported living, which I've only just now completed because my hips are no longer very good. But, look, honestly, I haven't had a career. I've had a stumbling through life. 

Pam: Val, I can't really let you get away with that one.

I'm sure there must have been a time in all of that experience where you had a lightbulb moment in terms of social justice for disabled people. 

Val: Oh, I've always had that. I mean, I've always felt a thing for the underdog and also strongly imbued with the view around human rights of all people, including people with disabilities.

One of the strongest things probably in my life was actually realising my knowledge as a person with a disability who was quite isolated was very limited. And early on I consciously took on positions to actually broaden my knowledge and understanding. I had one disability, I had no intrinsic or intuitive knowledge of anything such as sight impairment, Hearing impairment or anything else.

So one of the jobs in this long list is, my CV is so long I cull it in bits and pieces depending on a job now but at one point after I'd come back from Britain in about 1980 I was bored with being at university and I got offered to be a research assistant to somebody looking at disabled people and disaster from the University of Canterbury.

And I thought, oh, that will be interesting. 

Pam: Gosh, how ironic. 

Val: Yes. 

Pam: When you think about the earthquakes a few years ago. 

Val: This was a very long time before all of that. Yeah. But I had this wonderful opportunity to go along to 30 organisations concerned with people with disabilities and ask both the NGOs, the emergency services and people with disabilities what they saw as their safety or other risks with going from micro, such as if you were in a wheelchair and being stuck in a van you couldn't open the door, to a macro such as an earthquake.

And it was very interesting to see the different perspectives in all of that. But that was invaluable, spending six months looking at the wide range of disability groups, and what the issues were, and the difference between the people who had the disability, the service organisations of various types.

And so I consciously did stuff in those early years to broaden out my perspective. And yes, human rights are important, but you know, people with disabilities and their families are just very ordinary human beings trying to cope in a world that's not geared for them. And I guess that cliché, wanting to make a difference, but also realising the lack of understanding about disability at all levels.

Sometimes there's a willingness but without a knowledge of how to go about something. And sometimes people with disabilities can be their own worst enemies. Or they are scared to make clear their needs because they fear that vulnerability may be used against them. For example, speaking of doing that very early research around disabled people and disaster, I met blind woman who worked in a reception and there was glass three sides of her. And she was on several floors up, and I said, well, what would happen if something happened? She said, oh, there's always somebody here.

I said, is there? What about lunchtime? Oh no, I'm on my own for lunchtime. 

Pam: But it's not going to happen then, right? 

Val: Exactly, which of course, 30 years later that would have been absolutely disastrous. But it's because people often will hide their vulnerability. And I guess my view is, let's make it that the person shouldn't have to take it into themselves and hide it. They should feel comfortable enough in making that clear and have the same level of safety and security as anybody else. And that led to being DPA Policy Manager. It changed from the earlier role. And making submissions on so many legislative agendas to try to give people the rights and the safety that they deserve and the right to risk as well because sometimes there's an overreaction around safety and people sort of stuck in the middle of trying to have a life. And yet there is something about being realistic, but also having people take into account your needs without the person trying to have to hide it themselves. 

Pam: But we've also got the right to fail, right? 

Val: We have the right to fail and the right to risk. But I think also there is the onus on being a little bit realistic in terms of what you take on. That may sound negative but sometimes I see people with a disability take on some things that even if they weren't disabled would be a risk, but will be more of a risk for them, but they think, well, somebody's going to rescue me. And I don't like that idea of somebody having to rescue either. There's a funny kind of balance about learning to live with a disability and to take risks, but to take managed risks.

Pam: So in terms of the sector, I just want to turn to the sector itself, the disability sector now. Where do you think things are going? What of parity on boards, disabled people taking charge of the sector in various ways? What's your thoughts on that? 

Val: Well I think that more people with disabilities should be given the roles that they deserve.

But I do think they have to deserve them too. And not just get there because they have a disability. You have to recognise your skills and your deficits. But certainly we have some very able people with disabilities and they shouldn't be held back. As for the sector, I'm not certain. We've had our very high points, I think, in that we were on a roll in the 90s. And when we achieved the Human Rights Act inclusion we've had some very, very able people who've promoted stuff over the years. Different people like John Stott and some of the leaders in the disability rights movement. And there's some still very good people around, such as Anne Walker.

But often they are compromised if they work for government. There is a, a difficult thing in government. They want you there because you have a disability and you understand. And then they will kind of think, Oh, there's a conflict of interest. You're kind of like, you're damned if you do and you're damned if you don't.

There is also that sometimes disability, not always, can lead to an imbalance in your experience that, You may need to work with other people with disabilities or to be supported in many ways. That can be difficult to get that balance right. Personally, I'm very for partnership. I think if we all accept we've got advantages and skills and that these can be properly used.

I feel at the moment things are quite difficult for many people. Either the access is difficult, the understanding isn't there, the expectations are too great of people, they're more or less set up to fail. Sometimes the people with disabilities themselves haven't had the experience to understand how everybody gets a bit repressed in government and they may have quite a high profile in the disability sector and then get a job and find that they're back to square one. It's not an easy thing. I think that we, the disability sector, I'm hoping will regroup and get stronger.

Pam: What was it like for you when you were working? You were working in the Disability Support Services at the Ministry of Health for many, many years Val. What was it like for you in that role? 

Val: For the greater part of my time, I worked in disability policy in a small team as an advisor, then senior advisor, an advisor role bringing in a community perspective into that.

So I worked with policy boffins and in a small cohesive team. And we worked on a lot of issues over that period. And I actually enjoyed that later. As happens in government, there was restructuring, and I got shunted off to the purchasing side. By that time, there was the National Health Board, and DSS had become more of a purchasing thing.

And I was more of a policy, community sort of perspective and I was very unhappy. So that's the background to it. Much of the time before I worked in DSS and in government, I had been quite prominent in the disability sector, DPA advocacy on the radio and immediately you work for government, you are muted and that is quite difficult and over time in the disability policy group accepted my disability expertise, but there was always a bit of a limit to how far that would take you. And sometimes you found your expertise and knowledge was discounted according to the priorities of government. And I would go along to conferences and I still was a person with a disability with a view, and Alan Jones has always laughed at me.

Because I would say, I'm now wearing my Ministry of Health hat, and then I'm now wearing my personal hat. Because the point is that you can't separate yourself out. You do have that extra hat when you are a person with a disability, working in government, doing things that you care about.

It's pretty different from able bodied people. I've found some things so frustrating. For example, they put in a new kitchen on the floor that I worked in, and I went in on a Sunday to do some work and found they were putting in a very high bench. And actually it was high for most women, let alone me at four foot six and three quarters.

And they just completely ignored best practice or even sense around the kitchen layout that ended up not working for people with disabilities and it didn't work out for anybody else. They put in a accessible toilet , they put the door handle too high for somebody who worked there who used a wheelchair and had limited hand mobility as well.

So we pointed this out. We actually got Bill Wrightson to do a report. They more or less ignored it. And they put in a second handle. So that permanently confused everybody. There was two handles on the toilet. Sometimes it just was like banging your head against a brick wall to get sense, even when supported by the team that we worked in.

Generally, disability as a whole in the Ministry of Health was the poor relation. Later when it started to go over budget it became quite important. But you know, it was largely a Ministry of Health. And, oh yes, and disability. 

Pam: Isn't it interesting how groups and teams working on the disability sector or in the disability sector are often viewed at the same relative level that disabled people are in our society. 

Val: Yep, marginalised. 

Initially, in mid 90s, they made four directorates, mental health, disability, support, personal health. I think there was another one, and I can't quite remember it. Like, progressively, with subsequent changes, disability ended up a minor group over in the National Health Board.

And disability policy was cut off from it, which was a senseless sort of thing. My experience in government was I met some fabulous people. I had to conform to a certain extent, my powers were limited, and sometimes, if I said something it would get discounted, and later I might have been proved right. Some people I valued, valued my knowledge and experience. Other people, that didn't seem to matter. So I mean, gee, I wouldn't have probably stayed for so long if it had been a completely useless experience. Particularly in disability policy, I got to see behind the scenes a lot of cabinet papers and try and build in a disability perspective into that.

We were helped quite a lot, but when they appointed the Minister for Disability Issues in 1999, the little policy team that I was part of supported the Minister for two years until the Office for Disability Issues arose. So even after the Office for Disability Issues arose, we were still heavily involved in a lot of disability stuff that actually we were able to take a separate view from the mainstream dominant Ministry of Health.

So there were interesting things within the ministry and it, it wasn't an easy and it was largely hidden role. But I wouldn't have stayed if I felt that I wasn't achieving something. But it was a frustrating position. And sometimes you kind of felt, again, and I've referred to this before that if you said something, you might be being discounted.

Oh, it was a conflict of interest because you were just taking a partisan view and being subjective, when in fact, around disability you might have been, and from my experience, been extremely objective but knowledgeable, but you were sort of seen as the personal viewpoint. 

Pam: And yet that was partly your networks, et cetera, why you were employed.

Val: Exactly.

Pam: I think many of us have been in that position. It's rather frustrating, isn't it? 

Val: It is rather frustrating. There are some very hard working and good people in government. There are some people who just need to be put to a boot camp and to fully understand the diversity of the people that are out there that we're supposed to be supporting.

Pam: Valerie, it's been lovely talking to you today. Thank you very much for agreeing to come on Disability Disruptors. It's been a real pleasure talking to you. 

Val: Thank you. I hope it's of some use.