31. Luke Nelson

30 Oct

31 Luke Nelson

He has the voice of a radio announcer, and the passion of an advocate. His name is Luke Nelson and he has been a Banyule resident for the majority of his life.  Indeed, I interview him for this piece at his home in Watsonia, a home once belonging to his Grandpa Jim and which he now shares with an able-bodied friend through the Independence Australia (formerly HRSS) Homeshare Program. His family have known his neighbours for fifty years.

Listening to him talk, I am filled with a mixed sense of pride and awe at how much he has achieved since we attended the same primary school in Greensborough. He attended Loyola for a term before moving to a special school and day service for five years to complete his education. Despite medical advice that Luke would be a vegetable all his life, these days Luke regularly speaks at a variety of disability organisations, and conferences (most recently at the University of Melbourne), at times consulting on disability projects such DisabilityCare (previously the National Disability Insurance Scheme). He is also involved with reference groups and public speaking – a short time ago he conducted disability awareness training for the local fire brigade.  Currently he has a website and business cards in development advertising his own business, Luke Out Loud. The business will encompass public speaking, an access blog, and motivational videos, but his main pursuit will be working as a consultant on disability projects.

Luke’s career as a public/motivational speaker proceeds very organically. It is a word of mouth job, which is sometimes really quiet, and at other times busy. He began by cold calling disability organisations to introduce himself. Now he has reached a level where a lot of the time people ring him. The remuneration he receives for his work is quite variable, at times he volunteers, other times he is paid or compensated for his travel through taxi vouchers. Though it’s not about the money for Luke, he insists he is merely giving back to the sector which has given him so much ‘every time I go and talk to people, or do something on the disability field… the sector has given me tools and every time I give something back to people who haven’t had those opportunities and tell them what is available out there and what people can achieve, I feel like a billionaire. The individuals I help and the companies I educate…if I can walk out of the room and someone says, “I’ve learnt something”, that’s my payment.’ Life experience is the key to Luke’s expertise, for example, ‘I’ve been through the ISP (Individual Support Package) system, so I know what to look for, and I’ve been through some of your pain.’ An ISP is a funding package available to people with disabilities which covers support needs or equipment required as a result of disability. It allows the person to take control over what help they receive, and direct their own funding in ways which assist them to achieve life goals.

Luke is careful not to use the word ‘disability’ in his speeches, preferring to use ‘posibilities’ and encouraging people to instead consider what a person with a disability can contribute to their life and community if able to work and/or socialise. Luke’s motivation stems from his experience that expectations for people with disabilities aren’t as high as they should be; he believes they can be a lot higher. His philosophy is that if you can’t do something, find what drives you to do that activity and ask if there is another way of fulfilling that core desire or being part of that community.  He concentrates on the concept of using your disability to your advantage.

After visiting the US at age thirteen, he returned with a strong sense of injustice – why doesn’t Australia have the same standards of physical access? – along with a  stronger sense of purpose. His life mission is to change the people living with disabilities perspectives of their own strengths, weaknesses and capabilities as well as society’s general view of disability.

Luke was introduced to Youth Disability Advocacy Service around four to five years ago, and clearly he has found his calling, ‘I’ll be doing this for the next twenty to forty years. If I don’t want to do it, I won’t, but I will always be an advocate. It’s about the fact you can change people’s lives.’ His professional heroes are those who devote their lives to achieving inclusion.  For example: institutions for people with disabilities are viewed negatively by a vast majority of people in today’s disability sector, seen as places of segregation which do not provide  the full opportunity for intergration into the community and  many of which offer a substandard level of care. When describing one of his heroes, Luke explains, ‘he shut down an institution, and that takes guts, and his approach…not letting go. He’s been doing this for thirty years.’

So when is enough enough? ‘My biggest goal is to make our jobs obsolete, to walk into a room and for people to say, we don’t need you anymore because we know how to treat people with disabilities, we know how to support them, we know how to put access into houses, we know what the funding’s like. The day that that happens will be the day that I rejoice, the day that I’ve done my job. But in a sad reality’, Luke says solemnly, ‘you will never have that situation, one thing goes away another crops up. Something I get frustrated that people are not already informed about things like disability awareness training.’ Luke says we need to continually ask,  ‘what can we do to keep disability on the edge? What can we do to make things better?’

Luke is cautiously optimistic about the future of people with disabilities, both in terms of the funding they will receive and treament and  inclusion by the wider society: ‘I have great respect for the dawning of DisabilityCare.  It is a relief, but this is not a magic wand, it’s not going to solve everything and cover everything. Let’s be realistic, governments change, money may be allocated somewhere else.’  Relief seems to be the overriding emotion though because ‘it means our colleagues have done their job the best they can.’

If in power, the first item on Luke’s agenda  would be to put an extreme punishment on lack of disabled access, ‘…for the fact of exclusion, just to see what would happen, how many people would change their perspective, just to see how tough you’d have to be to make it all accessible so you’re guaranteed that a person with a disability could enter.’ After the punishment, the offending owner of the building should need to reapply for their venue licence.

When asked what he feels about the future of disability, Luke says ‘Attitudes are changing for the better but I am sceptical in some respects, society is still afraid, I believe, of people with disabilities though it is being eradicated slowly.

As for his key message to the general public? ‘Look at the person first, look at the possibility, look at how the person interacts. Look at the disability second, look at the individual first. If you can do that, then there’s nothing to fear.’

Words By:Nicole Smith

Photo by: Sean Porter

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