As a society, we can do better.

What a year it’s been so far. We’ve already been through one of the worst bushfire seasons we’ve ever seen, and before we’ve even had time to take stock, and thrown into a pandemic, which has drastically altered our way of life in a matter of months. We have seen what wonderful things humans are capable of in the face of adversity, and we have also seen some of the worst aspects of humanity.

By now, some of you may have heard of Ann Marie Smith, the woman with Cerebral Palsy who died in South Australia in April 2020 due to severe neglect. I have held off on writing this piece because of the multitude of feelings I have had in response to this case. Anger, disgust, but it was the first feeling that I had that I am yet to place my finger on, but my initial response when I heard about this case “oh, I could easily see how that could have happened.” What kind of world do we live in when a person can say that?

I’m privileged, I have a voice, a platform to express my opinions, a network of people around me, and yet as a person with a disability, I can easily see how this death happened, and that thought alone disgusts me. I shouldn’t be able to see that at all. My first reaction to Ann Marie Smith’s death should have been disgust and anger that a system failed her so badly. When I first heard Ann Marie Smith had been left in a chair 24/7 by her carer (I noted they said carer, instead of carers), my first thought was that the carer must have burned out being the only carer for this amount of time. Ann Marie Smith only had 6 hours of care a day, when in actuality, she probably should have had 24/7 care or at least a roster of carers to ensure she was being cared for properly. The fact that she only had the one carer highlighted that the company providing the carer was failing in their duty of care to ensure that Ann Marie Smith was sufficiently cared for and a satisfied client. I won’t go into the details of what should have happened between the agency and the carer as legal proceedings are in progress. Suffice to say, there were many missed raised flags that could have prevented Ann Marie Smith’s death from occurring.

While there were many more disturbing things to come in the news, such as “friends” coming out appalled that this had happened, but at the same time, they had not seen Ann Marie Smith in some time. If they were friends, they would surely know what conditions she was living in and raised alarm bells for her. She lived in what looked like a lovely neighbourhood, and yet this still happened. Maybe they thought she was being looked after because of the carer coming and going from the house. This aspect of the story is personally frightening for me, because if I didn’t have my network around me of great carers and family, then this could easily happen to me. After all, I do rely on carers.

There is now an investigation underway. It is becoming more and more evident that the structure of the system that governs the disability sector and, in turn, the lives of people with disabilities, is not working and needs to change. How can an investigation be satisfactorily carried out when the Minister overseeing the investigation doesn’t have basic answers about the case. The system needs to change, and society needs to change. People with disabilities have become a number. We are a diversity target. We are a number on the books. While the NDIA has afforded people with disabilities many great things, it is still fraught with problems. The fine issued to the provider of services for Ann Marie Smith as a result of not notifying the NDIA of her death does not have to be paid, only if the provider wishes to. What does this say about people with disabilities and our rights to be treated with respect and dignity. From my viewpoint, if there had been closer oversight of Ann Marie Smith’s care, this would have been avoided. Even if the responsibility is officially laid with a higher body, if a business is providing services to a person with a disability, they have a duty of care to ensure their clients are looked after and not just assume if they hear nothing, that everything is ok.

When I saw the lovely house that Ann Marie Smith lived in and photos of the neighbourhood, it showed just how important the community is. If Ann Marie Smith had been in a community that was connected, she may have had people who could have raised the alarm for her. COVID19 showed us just how important it is to stay connected. This includes making sure that all members of the community are connected. Know your neighbours, so that when something is different, you know something could be up. We need to break down these barriers that make the lives of people with disabilities hard so others can see that it’s those barriers that were are the problem, not the body of the person with a disability. If you’re sitting here and reading this, wondering what you could do to help stop something like this from happening, ask yourself, “what can I do differently to make for a more inclusive community?”. Or, “what could I change about my approach to this task that would allow for more people to experience it?”. Society has become too busy and too focused on our mission; we live in houses that are a part of a community. COVID19 has taught us that we are better together than alone, and we need to carry this forward.

Without realising it, society has become used to exclude people with disabilities, and I’m not talking about outright or intended exclusion. I’m talking about the practices that we’ve become used to that people with disabilities can’t take part in because of various barriers. You might not know any people with disabilities yourself (or at least you might not realise due to invisible disabilities), but we do live in your community, we are your neighbours, and go to school with your kids. Deaths like Ann Marie Smith’s (whose name I have chosen to repeat in full because I do not want her to be forgotten) are inexcusable. While change is required in the systems that oversee the disability sector, we as individuals have a role to play in our communities by ensuring that everyone in the community is a part of the community, however big or small. The way toward breaking down these barriers that allow this to happen, that allow the lives of people with disabilities to remain difficult, is connection.