Mike lives in Invercargill with his wife Tracy. A heavy engineering welder by trade, Mike was self-taught, loving his work creating large structures. Work, and his adventure sports, were a huge part of Mikes identity until his late 30’s, when a sudden decline in his health led to a diagnosis of Ehlers-Danlos Syndrome (EDS). By 40, he was medically retired, giving up his work, and sports, and beginning to build a new life.

Since that time, Mike has taught himself software development, Led the building of an IT system worth $3M (NZ govt contractor valuation), and has a startup creating successful SaaS products. Living in Christchurch at the time of the earthquakes, he founded and led community response organisation Addington Action, who cared for 3000 households. In this role he trained hundreds of volunteers, many of whom were unwell, and gained a lot of insights into the existing systemic barriers to employment of disabled and chronically unwell people, most of whom would love to work.

Mike is the Invercargill Chair for Disabled United NZ, and Chair of the Southland Disability Network.

We spoke to Mike about his experiences becoming disabled and leaving his workplace of choice, what he has done since, and the barriers and enablers he has experienced on his journey.

What are the main things which have made working life easier or better for you – i.e., which have enabled you to be part of the workforce, and succeed in it? Were these enablers provided by your employer/s, or other people or organisations?

A key enabler for me in engaging in work is wanting to do the job. Having a drive to do something, something meaningful! Attitude is also really important; you have to be prepared to find a different way of doing things. You gotta get the attitude right first!

Having the right people around you is also critical. Meeting my wife, who really helped through my diagnosis process, and working through the mental load of it all has been so important. She is my key support and champion. I have really good friends – I always say get rid of people who run you down! For me, as I have autism as well, it’s helpful to have good people who can help you pick up on cues or support your wellbeing. Be open about your disability and support needs.

Support workers who are good people, with good attitudes and skills can make a huge difference to life and ability to participate for disabled people.

What are the main things which have made working life more difficult for you – i.e., which have been barriers to your participation and success at work? Were these barriers a result of actions (or lack of action) from your employer/s, or other people or organisations?

A huge issue for me was needing to change my type of work totally. The fatigue and a spinal injury as a result of the EDS meant being physically active wasn’t really possible and so I had to stop working as a result. I had no formal qualifications because I was self-taught, and access to getting more relevant qualifications was difficult. After trying several employment options, self-employment gives me the flexibility to work and manage my health.

There was no way to make support to work in my original career area, but ICT work provides the flexibility needed – e.g. able to nap when needed. If specific support and training was provided, I could have gone into another traditional paid workforce e.g. in an office.

A lack of system flexibility for supports for disabled people and employers is a real barrier. The kinds of support available for disabled people to enter or re-enter the workforce are very limited and constrained in what they can support. They don’t necessarily meet the needs of users where they need them – e.g. they need to fit into a workplace rather than the workplace being flexible to their needs.

Even the pay rates for people who work as support workers for disabled people – they are low, so it’s harder to find people who are experienced and have good skills, as its often seen as short-term job. All this makes is much harder than it should be.

If you could give employers one piece of advice about supporting disabled employees, what would it be?

Hire on attitude. First, you get the person with the right attitude. It’s the same thing Richard Taylor of Weta Workshop talks about – that they hire on attitude. You start with attitude. People can learn skills, but you can’t learn attitude!

From there being flexible is key. Try things out, accept what works and doesn’t but keep moving.

Expect disabled employees to have to prove themselves as much as anyone else – don’t expect less. We have the same rights, and we have the same obligations, no different. We all come to work wanting to do our best and bring our best. It’s much healthier for everyone if we all work to the same expectations (provided proper support is provided!).

Is there anything else you would like to share?

I firmly believe that every disabled person has a right to a bloody job, to have a family and to have their own home.  To live and be as accountable as everyone else. And to contribute like the rest of us. Why not?

It’s what you can do. Not what you can’t do. And you might just have to find a different way to do it. We all have the potential.

I also think we need to look really hard at the workforce in this area. Having a better paid and trained disability and care workforce would be a game changer. Making it a long-term prospect, a real career which was respected, like being a nurse, or builder, and properly renumerated, stable, good retention. There are obviously people who are support workers who really, really want to be a support worker because that’s what they love doing. We need to make that more possible.

To learn more about Mike and his work, see http://www.redworks.co.nz/ and https://www.blog.ajabbi.com/