I have been having thoughts on why people with disabilities do not engage with disability learning opportunities provided by organisations such as disability organisations and others.

I recently went to a ParaQuad offering with a free lunch. The presenter was a physiotherapist trained in wheelchair fittings! It was a fabulous free opportunity, but I was the only person there. This got me thinking.

We on the boards of our disability organisations are, dare I say, high-functioning, mostly stable (health wise) disabled people. We don’t have to consider (mostly) the day to day physical and mental burden of disability.

I visited Northgate in Glenorchy last Wednesday and had lunch with a disabled friend who was on respite from Devonport. It was like disabled persons day out with heaps of support workers having lunch, some in groups some individually. This was their lives, and this was their big outing.

I hate to say it, but I think we might have lost touch with the reality of most people with disability and their lives.

The struggle with poverty, with access, with just basically trying to live a life is hard enough and being offered ‘courses’ on how to be an advocate is just beyond their motivation levels and capacity.

I’d like to know the statistics on how many people with disabilities actually engage in these offerings across DPO’s (disability provider organisations).  I’ve done a lot of work across multiple disability agencies in recent times, where I am paid, and the participants are paid also, and uptake is still really small. People with disabilities just don’t seem to have the capacity to engage in the way we idealise the way they should.

The reality of disability is:

“School retention for people with disability varies by remoteness. Of working-age people who acquired disability before age 15, more than 1 in 6 (17% or 47,000) living in major cities left school before age 16. This is lower than for those living in inner regional areas (31% or 30,000) and outer regional and remote areas (36% or 11,000) (ABS 2019).”

My argument I guess is we are aiming too high, and our expectations are too high. As boards we are mostly middle class, university-educated white people. Pitching what we think people with disabilities need. Maybe it’s time to rethink our offerings.

We should go out into the community and see what people want. We need to contact agencies (support agencies and networks) and see what is needed.

I feel we are making presumptions that just because people are disabled, they want to be engaged in a disability community and from my findings this just isn’t the case.

Food for thought: are we profiling PWD using our own image? Are our expectations that everyone should want to be like us?

I am not saying we should not keep going but I am just saying we need to rethink our motivations and modus operandi.

Providing ‘training’ opportunities for people with disabilities run by able-bodied professionals in some cases provides valuable opportunities for PWD to learn more about their bodies and needs, especially in the areas of specific need like physio, occupational therapy and other real life applicable learnings that are close to day-to-day living and surviving.

But higher order ‘training’ on advocacy and activism run by able-bodied people in most cases to me seems like ‘ableism’.

I feel like the few of us that have the capacity to advocate for better outcomes for the majority are getting bogged down in ‘busy work’, spending hours at meetings when in my opinion we should be out holding banners and shouting on street corners about what PWD really need.

But we can only do that if we actually engage with PWD and not mirror ourselves on to community.

The real issues are poverty, education, employment, housing and access (both physical and emotional), transport, and the discrimination that comes from all of these.

When you don’t have one or more the rest are unattainable and that’s the reality of most people with disability.

Government is funding millions into Disability Provider Organisations with very little scrutiny on the measurable outcomes of programs at this time. But this will change, and we need to make sure that to be in the forefront of disability advocacy we are relevant and have measurable and good outcomes.

We need to get back to basics and engage with community and to do that we need to get out of our silos.

Tammy Milne is a deaf interpreter, a community activist in various fields and a person living with Arthrogrophosis Multipex Congenita.