In a recent article I read on MamaMia about a young woman having to prove her disabilities, I was struck by the similarity to my experience, and that of many others, of having to prove we have dementia.

“In just over the past month, Rhiannon has received two parking fines. The first of which she contested and was told she would have to “prove” she was disabled.

“It’s not just the fact that I’ve been given a parking ticket, but the first parking ticket I was given, I contested and I was asked to prove that I was disabled even though my disabled permit was on my windscreen. So I was asked to provide medical evidence that I was disabled, even though you need to have that to even qualify for a disabled permit.”

“I went to my doctor and asked her for a doctor’s report and she was just like, ‘Are you kidding me? I cannot believe that you’re going to provide this. This is an absolute joke’.“

The same day she got her second ticket, she also attended an event that offered no disabled parking. It proved once again that “there’s obviously an access and inclusion issue within our community”.”

It reminded me of when I made a decision to take a staff member from the Australia Day Council with me to an appointment with my neurologist, simply to prove to them I have dementia. He was incensed, and didn’t see it as a joke at all, but as offensive, and also as a major slight on his perceived ability to diagnose people with dementia. Oh, and I only did this, as three ‘close family and friends’ who for now, still remain nameless, had told a reporter I was faking it, and I wanted to reassure the Australia Day Council of my integrity and authenticity, as I had been awarded the SA Australian Of The year at the time. This was a case of serious discrimination, although I chose not to take it to court…

Clearly, daring to live beyond dementia is not yet well accepted and 20th century views of dementia prevail..

It is discrimination to be asked to prove you have a disability; this includes dementia.

Disability discrimination is when a person with a disability is treated less favourably than a person without the disability in the same or similar circumstances. It happens every day to people with almost all types of disabilities, includign peopel with dementia. Unntil everyone supports that dementia is a major cause of cognitive and other disabilities, and then actually embed it into their work and into our care pathways, they will help to keep this discrimination alive.

Most of the time, no organisations provide the cognitive ramps needed by people with dementia to have equal access, or more often, to have any access at all.

This is the same as asking a person without legs to walk up the stairs, or currently, us expecting people with hearing disabilities to read our lips whilst wearing face masks. Even people without disabilities see this as unacceptable.

Swaffer, 2021

I’m meeting with a couple of reserchers soon, who are doing research into young onset dementia and our experience of employment. This will be interesting, and I am sure, extremely enlightening once published. We are being discriminated against in the workplace, and I actually yearn for the day when I see a role or job being advertised, that I am qualifited for, and felt I could actually apply for, with the knowledge I would have a chance of getting even an interview for the job. Just because I have dementia, does not mean I do not want the same opportunities as all others for paid work.

Human Rights Watch Australia says:

If you have a disability, the Act protects you against discrimination in many areas of public life, including:

• employment – getting a job, terms and conditions of a job, training, promotion, being dismissed
• education – enrolling or studying in a course at a private or public school, college or university
• accommodation – renting or buying a house or unit
• getting or using services – such as banking and insurance services, services provided by government departments, transport or telecommunication services, professional services like those provided by lawyers, doctors or tradespeople, services provided by restaurants, shops or entertainment venues
• accessing public places – such as parks, government offices, restaurants, hotels or shopping centres.

The Act also protects you if you are harassed, because of your disability, in employment, education or in getting or using services. I’ve been harrassed and bullied many times, but frankly, who has the energy to take people to court over this? Life is hard enough living with a terminal, progressive chronic condition that continues ot cause me multiple acquired disabilities, that almst no-one provides disability access or support for, as it is!

People with dementia deserve equal access to the CRPD..