I'm a 52-year-old man who has recently returned to live permanently in New Zealand after working in Australia. I've always spent about three months a year in New Zealand, so it is coming home. My health has been deteriorating recently so there is quite an adjustment in accepting this and re-establishing friendships, church connections and a place in my community.

When I was seven I contracted polio and spent the next four to six years in hospital, for much of it totally paralysed in a full cast. When I went home to my parents they had to carry me everywhere but I regained strength and began to walk on crutches. I was finally well enough to go to school and thought it would be exciting but it was hell - because of the braces and crutches I was bullied and beaten. I didn't share this with my parents and made my first suicide attempt at 14. I remained depressed and had a major breakdown in my late teens. Spells with alcohol and drugs followed. I was in trouble with the law, but at that time I did not want to accept any responsibility for my life or action - I blamed parents, schools and doctors. I ended up in a psychiatric ward and had a time when I chose not to speak. However, inside I always knew I could do better, there was more for me, and my belief in God brought me through.

I received counselling and became involved with a GROW 12-step programme for people with emotional problems - similar to Alcoholics Anonymous. This helped me to take responsibility for myself, to forgive and stop blaming and begin to live. For me a big part of that was to help others.

I've had a number of jobs but I have worked for GROW in America and Australia. I've been involved in training psych nurses, and working in prisons.

I have been fighting post-polio syndrome - it's described to me as a dormant virus that is now attacking the good side of my body. This results in fatigue, some difficulty in talking and mobility problems that are making the need of an electric wheelchair urgent. The effects are accelerating.

It's an adjusting time to make sure I can get involved in a new community that meets the needs I believe we all have - to be valued, to have a purpose in our lives and to be in harmony with the people and places around us.

I am now in need of some home care and at present value highly the woman who comes to do some housekeeping for me. I will soon need to have assistance with showering and it is important to me that I have a male carer. My service provider has indicated they will be unlikely to be able to provide a male carer.

What is it with our society that we value carers so lowly on the pay scale when they offer practical assistance and companionship, laughs, etc for those they work with? For some of the elderly I know their carer is the most constant visitor, the 'light in the day', and the person who watches out for them.

I need home physiotherapy. I have heard that my service provider is considering training carers to deliver home physiotherapy. I wonder if they have considered what it would be like for people like me to trust an untrained physiotherapist. I risk pain and further injury that could result in the loss of my remaining mobility. My need is for a trained physiotherapist who can make ongoing and constant assessment of my situation - not someone quickly trained in a few techniques.

"I've always been active in the community I live in - I value voluntary community work. It's part of who I am."

My quest for a wheelchair resembles a nightmare. My first request was declined, although I was falling up to five times a week and hurting myself. When an occupational therapist came she completed the assessment form 'in the right language' and I've been assessed as urgent. I've been on the urgent list for six months now. I have politely tried to get myself a wheelchair, but I am told I'm on the urgent list. Is there a list above urgent, and what hope is there for those on the non-urgent list? I know someone in a different area who got a wheelchair within a week. Does where you live influence when you get a wheelchair?

I want to work for the Citizens' Advice Bureau. I have plans to initiate a scheme where people in the community adopt an old person in a nursing home and become their friend. I have been involved with such a scheme in Australia and know it works well.

I can see, from my own efforts to find people with disabilities around my age, that there is a place for establishing socialising groups for people with a range of disabilities, who have wide and outgoing interests. Since returning here I have met a bit much of the 'he's disabled so he must be intellectually impaired' attitude.

"I used to be very good at advocating for others, and for myself, but I am realising that when you are fatigued and not well it is a real struggle to get access to service providers and have them listen and deliver."

QE Health is a vital place to me, it's a lifeline. It has the only post-polio clinics in the country. Here we get up-to-date information about our degenerative condition, physiotherapy, occupational therapy, mud baths and wheelchair assistance. Going there each year is a chance for all of us to give each other support, maintain friendships and gain energy and renewed mobility to keep going. Our local DHB has not renewed its contract with QE Health. I don't think they realise the holistic value of what is offered, because they are saying a physiotherapist in Auckland can offer the service. There is no value put on the mutual support, friends who understand and experts who use a range of treatments to maintain our limited mobility. This is pretty devastating for us and I am currently advocating with senior management at the local hospital for funding for the treatment at QE Health to continue.

It's tough living on a $200-a-week benefit and needing frequent doctor's visits. There is no PHO (primary health organisation) near me, so it's $45 a visit. At a time of rapid changes in my health, that could be fortnightly or monthly. Then there are frequent visits to the hospital. The car parking is $12 a visit. No appointments at the hospital can be coordinated so I could be there on two consecutive days. The costs mount up.

If implementing the Disability Strategy means making service providers accessible and accountable, and it means disabled people are given more opportunities to advocate for themselves, and the solutions they propose are adopted, then there will be a constructive way forward for disabled people. I've spent a good part of my life advocating for services, but I never raise an issue without offering a workable solution. I am sure most consultation with disabled people is like that, focused on practical, workable solutions to real problems.

For all the bureaucrats

It must be difficult
for those who deal
with money
and with costing
and with balancing
of books and receipts
and trying to make
insufficient cash go even further
to remember - always - first
and foremost, and forever,
that all of this relates to people
not to numbers.

These people are living beings, each unique.
They breathe, and think, and feel
and everyone is special
to themselves and other people.

You wield power over them.
Remember always they are not, not now, not ever financial units, or
revenue producing units
or numbers.
Do not crunch their numbers.
Do not let your computer
spit them out all chewed.

Somehow you must find a way
to cherish all the people
as individuals.
Don't let the numbers
come between yourself and them.
Don't be a faceless bureaucrat.

By Pippa Coulston