I would like to begin by expressing my deep gratitude for the invitation to provide today’s oration. I come to you, standing on the shoulders of disabled giants who have paved a way for me and many others to live and enjoy some equality in modern Australia. The work of the disability rights movement is incredibly powerful within Australia and deeply personal to me. I acknowledge those who have gone before, those currently alongside me and those who will follow us. We are proud to be disabled Australians and we hold our power and space to invite the Australian community to create a fairer, inclusive nation with us.
For me, this oration is an opportunity to share with Australia what I believe is one of the biggest issues of our time. While I often speak with the disability community, to local communities and to government about disability rights, having the opportunity to address the nation on disability rights offers a moment to provide insight into our lived experience in exchange for the galvanised support of all Australians to work with us toward equality. Today, I would like to speak to you about phasing out the practice of segregation in Australia, in settings of education, employment but especially, housing.
I am at the age of peak baby-making season. It is a season of life familiar to all generations, where collectively your age cohort appears have woken up and agreed that now is the time to create the next generation. It typically arrives on the backdrop of freshly built and bought houses, achieved careers and follows wedding season within about 5 years. You know the season is starting when the Saturday morning brunch conversation turns to ovulation cycles, fertility appointment debriefs and diets of spinach. As our brunch table changes over the years from these conversations, to altered times around sleeping schedules and to take-away rather than dine in to accommodate the roving toddlers, every time one of my dear friends announces quietly in the confidential confines of the brunch table “I am pregnant”, on the way home, I often think to myself “what will life look like if this new little one has a disability? What laws, policies and practices are going to consume my friend and demand that she overcome to achieve a fair go for her child? Will her child have to challenge to be equal in their lifetime?”.
I think this not only because I spend nearly every waking minute thinking about these challenges and barriers facing people with disability in the here and now, but also, because I know if that eventuates, she is going to call me from a birthing suite and demand a clear, comprehensive, 10 minute or less run down on the NDIS and I really had better be prepared for that!
It is also abundantly clear to me, having been deeply involved in the disability rights movement for almost 20 years and having represented many people with disabilities and their families, entangled in one legal system or another that defending disability rights is disproportionately women’s work. Women and girls with disabilities face disproportionate levels of violence and abuse, demanding that they become fierce advocates from an early age. And for the parents, this will mostly be a reality faced by my female friends. While of course, men are actively involved in some family scenarios and I have met Dads who have been the change-agents for their kids in some extremely impressive ways, I have seen more women with disabilities, Mums, grandmothers, aunties and sisters who take on, by choice sometimes, but more often by expectation, the role of advocate; the role of defender. Women are overwhelmingly the ones who carry the load of navigating complex systems presented to disabled people either for themselves or for others, another unpaid, unseen role. I wanted to take this opportunity to say that I acknowledge you and that I see you. Thank you for all the work you do.
When I ask that question to myself following the quiet pregnancy announcement I think in words of “overcoming” and “challenges” not because that is how I see disability but because Australia in 2023 does not treat disabled people equally and demands that they overcome and be challenged to exist.
Australia in 2023 drives a narrative that disabled people are less than, are not worthy and are not expected to achieve much because of that. There is little recognition or understanding across the Australian community that we face significant barriers in laws, policies, practices and the built environment that actively work to keep us out, to prevent us from participating equally. When we do not participate equally, it is perceived to be an individual fault and so that individual not worthy. This carries forward into the ideas of being cured, of being shamed for being disabled and for wanting a life not to be disabled above all else. We see this narrative in our health and medical system where expecting parents are routinely and matter-of-factly advised by trusted medical practitioners to consider aborting their unborn child on the basis of their disability; on the basis of that doctor’s understanding of disability and ingrained view that we are less than. Currently, in Australia, 93% of pregnancies are terminated where a confirmed prenatal diagnosis of fetal Down syndrome is made. While the right to choose to terminate a pregnancy is paramount, this is disconcertingly high. This is the danger with attitudes being left unchecked, uneducated, and unquestioned. The harmful attitude is not confined to derogatory conversations at the pub or close-minded chats in the corridor, they infiltrate our decision-making and inform our practices. In this case, they led to lives lost. It is a timely reminder that we must all work toward actively investing in what the policy and law nerds call the “social model of disability”. The social model of disability was a model developed by disabled people in Britian in the 1980s and it recognises that disability ‘is an evolving concept’, and that persons with impairments are often prevented from exercising all of their human rights and fundamental freedoms by social, attitudinal and environmental barriers.
But the thing I fear telling my friend as she holds her newborn bundle in the loungeroom while we sip our plant-based-milk-latte is that having a child with disability will likely see them removed from their cohort across the life course. That in Australia, we have active, decades-old systems in place that seek to take disabled people from where they are meant to be and place them with other disabled people, away from their peers. This practice, known as segregation, occurs most potently in places of education through special schools and disability units, employment most disturbingly through sheltered workshops or more the marketable “Australian Disability Enterprises” and housing not only through groups homes where disabled people are given a room in a house and forced to share with other disabled people they do not know with sometimes upward of 6 to a house but also through clustering of units housing only disabled people and an absence of homeownership options available to disabled people as they are to non-disabled people.
It’s funny you know, in this conversation when the tiny bundle is still sleeping at 10am, the overwhelming and inherent human belief that with life there comes hope and endless possibility, my friend will join me in a chorus of “not for this little one”, “that won’t be their fate”, “we will demand it to be better and so it will be”. But as my friend starts to navigate motherhood of a disabled child, receiving advice and input from the healthcare system, early childhood system, education system, employment system, housing system and so on, my views will seem more and more radical. There is a distinct risk, I will become like Weird Barbie in this story. Current policies and practices will inform the views advising my friend and will tell her that her child should go to a “special” playgroup and then a “special classroom” because her child will be treated better or have a fairer go, away from their peers. It’s what Catherine McAlpine, CEO of Inclusion Australia coined “the polished pathway” where disabled people, especially those with intellectual disabilities are put into special schools which lead to segregated work and segregated housing all under the guise that it will be safer or easier for the person and those who love them.
Some of these views will be communicated to my friend, forcefully or without any other options. I will exclaim on the sidelines “outrageous, don’t do that! They must stay with their peers, they must be treated equally” but slowly with all of the mothers love in the world, she will quietly start to say back “well, Nat, the regular service can’t offer what we needed” or “I don’t think I can do anything else, they’re telling me this is my only option” and understandably, “I am so tired, this will do for now, he’s happy there, I’ll try and find a better option in the next few years”.
And that is all from the perspective of a parent, who is not the actual person affected by segregation. It is fundamental that we place more weight on listening to disabled children and acting on what they want. Allowing and hearing disabled children advocating for what they need and want is paramount to reforming systems and structures be more inclusive and adoptive of a human rights framework. In June this year, I attended the United Nations for the Conference of State Parties to the Convention on the Rights of Persons with Disabilities. The Conference brings together country leaders and civil society representatives to tackle disability rights facing the world. At this Conference, Australian Youth delegate, Charlotte Young, a young woman with disability submitted to the United Nations that disabled children and young people did not want to be spoken for by their parents, teachers and carers. That their voice needed to be heard on issues that affect them. This is their human right, and we must realise that. If Australia is going to be serious about ending segregation in settings like education, we must listen to our children and young people being subjected to it.
It becomes impossible for parents and children alike to persist in their views for true equality and not become accepting that in some areas, their full participation will not be realised in their lifetime because of their disability in modern Australia.
I know this, not only because of the endless research and expert reports available including the freshly printed Disability Royal Commission report, but because this happened to my parents. They did not have a Weird-Barbie-disabled-friend reading them the United Nations Convention on the Rights of Persons with Disabilities at every decision-making point in my life, but they did have a unique-for-their-time tightly held view that I was going to defy gravity and get some equal rights in my lifetime. I grew up in the 90s and at that time children with disabilities did not go to mainstream schools, did not participate in social activities or when they grew up, did not work in open employment. We were really one of the first generations to not be removed from our families by default of our disability, with our parents offered the choice for us to stay with them or be institutionalised in homes for disabled children. Despite the time, I did access mainstream school, there was never a doubt around the dinner table that I would go to university, I played with my friends in local activities on weekends and I was always going to go to open work in a building with an elevator. But where my trailblazing parents couldn’t navigate through the thick ableist forest of systems was housing.
As you can visually tell, I am in a wheelchair which pretty much suggests what you might assume – I can’t walk. But also, cannot get myself in and of bed, dressed, showered or on the toilet. I struggle to make meals on my own. Really, all I can do unassisted is brush my hair and teeth, put on my make up and practice the law. And I have always been like this. I have never really stood up, I definitely have never taken any steps or walked. I have used an electric wheelchair since I was 8 – and even then, that was fuelled by the discovery of my teachers that I was roping in all my school mates to push me around the playground because I couldn’t actually push myself in my manual wheelchair. My parents did all of these daily tasks for me from birth. As I grew up and got bigger, equipment like shower chairs and hoists became involved. Wheelchair accessible cars became our family transporters as transfers in and out of the care became too tricky to manage on the daily. As the years rolled on, our lives became set up for this level of impairment.
But the set up for receiving high-level care supports and a wheelchair wasn’t seen in the housing market. Where was I going to live when it was the natural time for me to move out? There were no clear models of housing for people who had a high-level of care so my parents hatched a plan. And before I tell you the plan they hatched, I’ll just add a note for historical accuracy, that there were housing models for people with high-care needs, they were all segregated living options. With their busy lives as small business owners of two also busy girls, they weren’t across this but that was the option: go live with other disabled people.
So, their plan! When I was 14, my Dad ended his time in a leadership role with Royal Flying Doctor Service in Port Augusta, a regional centre in Far North South Australia and we moved to Adelaide for better educational opportunities for me and my sister and for access to better services for me. They built a house, it was the first – and only – house they built for our family. And they built it for me to live with them forever. There are essentially two wings of the house which makes Mum and Dad sound more opulent than they are. They would live down one end of the house and I would live down the other. There’s a bedroom, a large accessible bathroom and a living recreational space. In the middle is communal areas of living, kitchen and dining spaces. I would live in my end and they would continue to do my care thrice daily, every single day until they bowed out due to age-related illness or similar and then I would maybe have some support workers. We weren’t really clear on support workers. My aunty that we see once a year at Christmas is a support worker and her work seemed somewhat mysterious but it was familiar enough to know that there was probably an option lurking out there somewhere. We’d find it when the time was right, but that was decades off into the future.
I guess it was an okay plan and you’ve got to respect that they sunk all their life savings into it and were deeply committed to it. I was always aware of the plan, but I figured at the inception of the plan when I was 15, it was a future me problem. Their plan would have worked if they did not raise me in the way they did. See, they gave me this heightened expectation that I was going to have it all. Not only was I going to have equal opportunity but those equal opportunities were going to be relative to what was on offer to the rest of Australia. The fourth component of our nuclear family is my big sister, Victoria. She is not disabled and has offered a lifetime of comparator to what I should have as a person of that age, race and gender without a disability. If my sister was getting it and I was not, then that would need to be remedied. Whether it was my sister getting the latest Nintendo Gameboy, or her being able to go to the local primary school, I was going to be in on it. There was an inherent narrative in our family that I would have what Victoria had in terms of opportunity (and sometimes Christmas presents). So when Victoria moved out of home but my parents had proposed that this was a milestone I would not be following her through, I flat-out rejected it.
My rejection started at about 18. I had just finished Year 12 at that mainstream school and was awaiting commencing my first year of law school when I joined my first disability advisory committee which inducted me into the disability rights movement. The Committee was chaired by a man with Multiple-Sclerosis, Jim Kidd. Jim used a wheelchair too and lived about 15 minutes from my parents’ house so would come by with his accessible taxi and driver to pick me up for committee meetings which were in the city. Jim lived in his own house, and he also couldn’t go to the loo himself. My brain started ticking over. I would try to subtly ask him questions in the taxi on the way to meetings, “how do you … like … do things?” 18 year old me would gently pry. I need not ask any more and he would be indulge me with detailed stories of how he managed his support workers, organised his day and had equipment and technology to create less reliance on those support workers. I was inspired.
That same committee had a presentation by a government policy officer, Trish Spargo, who would in later years become a dear friend of mine on the pressing topic of “young people in residential aged care”. People with disabilities aged under 65 years that have high-care needs are placed in residential aged care “due to a lack of timely funding for viable alternatives”. Many people housed in residential aged care will have acquired their disability in adult life and be admitted to aged care in their 20s and 30s. Importantly, in 2019, the then Morrison Government committed to phasing out the admission of younger people in residential aged care with targets of no people entering residential aged care or living in residential aged care under the age of 45 by 2022, and having no people under 65 living in residential aged care by 2025. The targets have not been met but there has been a 24.7% decrease in those under 65 living in residential aged care in 2022 from 2021, and a 30% reduction in those entering residential aged care compared to the previous year. This approach demonstrates the ability of government to use a phase-out public policy commitment to translate into real, measurable change, progressively ending a segregation practice that profoundly violates the human rights of disabled Australians. This is important because that is now what we are asking the current government to do to phase out segregation in settings of education, employment and housing.
Anyway, as part of the presentation, we got some handouts that provided criteria for a person being at risk of going to residential aged care. I used the criteria to form a polished argument that would speak to government – I was well into my first year of law at this point – and rocked down to the local Disability SA office alone and told them I was at risk of going into a nursing home and that I couldn’t stay at home any longer. They needed to find me a new house where I could have my supports.
My parents, who were happily providing my care, operating in The Plan had no idea that I was actively bringing the government into my rebellion. So while my friends searched on realestate.com for a rental and set up shared houses together, I was put on an accommodation register. An Accommodation Placement Panel after a few months determined that the university student, brimming with potential, should be placed in a suburb just a mile from the city centre in a physically accessible unit where support workers were provided around the clock. There was never a conversation about facilitating my access to the private rental market or having support workers that I chose. I was to move into this unit, one of six that housed other disabled people, forever. A new Plan made by other people about my life that was going to last forever.
This was one of the most profound experiences of segregation that I have experienced in my life and hope to only experience in my lifetime. I lived in what is called a cluster site which were housing options developed following the deinstitutionalisation of people with disabilities. They cluster people with high care needs together so that the support workers can have longer shifts and it costs the government less money. There is no part of the model that actively supports the disabled person choosing where they live, who they live or what their supports are. While you have your own house, you share supports so you have shift times set and get an allotted amount of time to do what you need to do. You’ll have 30 minutes to go to the toilet, 45 minutes to get into bed, an hour to get dressed and so on. If you ran late, your neighbours would be waiting, and the workers would be behind. I got really good at going to the toilet on demand, not a minute before or longer.
I lived in a unit at the front and to look at the units, you did not immediately know that they were any more than run down units in a back street. But everyone in the street knew that a bunch of disabled people lived there. I often caught people staring into the units, trying to get a glimpse of us. We were different, othered and not the same as everyone else. The government had put us there. That narrative of less than cemented in bricks and mortar.
I lived in that unit for ten years. I set up a beautiful life there with my two poodles, Cooper and Alfie and turtle, Frankie. We had a small garden, and the unit formed the backdrop for my years at university where I studied to complete a commerce degree, law degree, and my Masters of Law. I returned to that house after winning Young Lawyer of the Year, twice; I held respected roles in government including as a solicitor on the South Australian Child Protection Systems Royal Commission. I battled and won against a cancer diagnosis. I had my first kiss in the lounge room and cried in the kitchen when my heart was broken. But above all else, I learnt how to be disabled. By that I mean, I learnt how to run support teams – to advocate for better services, know when support workers were about to perpetrate violence or abuse against me and how to respond, I learnt what I could do for myself with technology and workarounds and what I really would never achieve in my day without support.
Cloaked in the equal opportunities achieved in other areas of life most notably, education and employment, at moments, I became less of a Weird Barbie and more of a conformist Barbie. I had all these other great life things happening, did it really matter that I didn’t choose where I lived. It was pretty convenient, it was close to where I went for work and leisure. The yard was a good size for the poodles and who even cares who your neighbours are, we barely talk anyway.
This is the dangerous outcome where systemic segregation drives low expectations, you are lulled into believing that this is good enough. This will do. This was all I could achieve. Those ingrained low expectations do catch up after all. It is also a timely reminder that human rights violations are not always screaming, graphic incidents of violence. It can be this subtle, gentle push to the margins and suddenly, you are the leading human rights lawyer that lives in a segregated environment, accepting that to be as good as we can do in our lifetime.
But one thing I am sure of is that without housing, I would never have realised so many of my human rights and life would have been much more marginalised than it has been. When I trace back through my life to date, having access to accessible, secure housing has been my gateway – and excuse me for a moment while I rattle my way down Australia’s international obligations on the rights of persons with disabilities – to employment, social participation, independent living, family and privacy; just to name a few.
And while we recognise that all human rights are indivisible and interdependent, if anyone ever asked me what is the human right I wish most for people, it is the right to housing because it is that gateway to realising and protecting our other human rights. In 1996, in an address to the Council of Homeless Persons, Chris Sidoti, then Human Rights Commissioner said “adequate housing is essential for human survival with dignity. Without a right to housing, many other basic human rights will be compromised including the right to family life and privacy, the right to freedom of movement, the right to assembly and association, the right to health and the right to development”. The Disability Royal Commission also recognised that the lack of a secure and accessible home can also impact other areas of people’s lives, making it harder to obtain and maintain meaningful employment and access the support they need. This is why ending segregation in housing is the issue of our time.
So if go back to my baby-making friend and think about if she asked me in 2023, “where will my child live when they move from our house?”, I would have to tell her about how the housing models she accessed as a non-disabled person are largely unavailable to her child due to a lack of accessible housing stock in Australia and her child’s lowered likelihood of achieving economic security but also that most housing offered by the government to address the inequity faced by disabled people in the housing market is segregated, forcing her child to live with other disabled people without consideration of what her child’s wishes or preferences were.
Misplaced investment by governments, historical approaches to housing by way of institutionalised living and current community attitudes accepting that people with disability will not be participants in our society or their participation in society remains the sole responsibility of the government has eroded the opportunities for people with disability to go beyond the segregated living options presented.
This is unacceptable and presses that we must end the segregation of disabled people in Australia, in all forms, including in housing.
Now, I can’t get too far into advising a generation on housing without acknowledging at the outset that there is a housing crisis in Australia. We have been warned that, in purely economic terms, housing supply has not kept up with the underlying demand as a result of population growth and trends in household formation. A reduction in the size of public housing stock has reduced the ability of governments to provide affordable housing to low income households, leaving many behind or spending “ever-increasing proportions of their limited income on housing”. Researchers from the University of Queensland opine that we got here – to the housing crisis – by devesting in social housing and other forms of housing that are affordable and created policy that views housing “not simply as a means for people to live [but] housing is a vehicle through which to become wealthy”.
For people with disability, the housing stock now in short supply was never accessible to begin with and we are disproportionately impacted by government’s divesture of social and public housing coupled with their persistent, intergenerational focus on investing in segregated living options. So while I acknowledge that the housing crisis, fuelled by the cost of living crisis is and will continue to disproportionately impact disabled people; I would like to continue to focus this oration on the need to end segregated housing for disabled people. I want to live in a world where the housing options available to all Australians are available to disabled Australians. I want to be able to tell my friend having a baby in 2023 that her child will have the equal opportunity to rent or buy a house in Australia as they choose and wish, notwithstanding that those opportunities are quickly and drastically diminishing for all Australians.
The only law that excludes a person with disability from owning property or choosing to rent a house is guardianship and administration laws. Guardianship and administration laws, operational in all States and Territories lawfully remove the legal decision-making capacity from people thought to have, in the words of the law, “a mental incapacity”. These laws disproportionately impact people with intellectual disabilities and psychosocial disabilities and permit the appointed guardian to decide where the person lives and do not permit the purchase of property without the consent of a Tribunal. We must end these laws in recognition of the human rights violation committed by the legislated removal of a person’s decision-making capacity. It is a practice that has no place in modern Australia.
Otherwise, people with disability can choose where they want to live from a legal perspective, but those choices are significantly curtailed by inaccessible housing stock and significant rates of unemployment or poverty.
From a national policy perspective, the Disability Royal Commission describes people with disability as being “conspicuously absent from key national housing and homelessness policy frameworks”. An absence of consideration, mention or inclusion of people with disability in national agreements and the interim Housing Supply and Affordability Council established in January 2023 to provide independent advice to the Australian Government on matters relating to housing supply and affordability has no disability representation or mechanism to ensure the needs of people with disability are addressed by council initiatives. The Disability Royal Commission state “this lack of integration between housing and homelessness policy and disability policy at a national level leads to a significant policy gap and fails to put appropriate focus on the housing and homelessness issues that affect many people with disability.” In this respect, it doesn’t seem that there will be any immediate inclusion of disabled people in national housing policy in the foreseeable future which is deeply concerning.
With little choice on the open housing market by way of design and price, disabled people turn to the public, community, and social housing sectors but these are sectors also failing. In her winning entry for the Gavin Mooney Memorial Essay Competition, A Place to Call Home, El Gibbs explains “previous Australian governments believed that affordable housing was not only important for individuals and families, but also valuable for the wellbeing of the whole Commonwealth. … Public housing was integral through to the 1970s to ensure a degree of equity. By the mid-1960s, one in five Australians lived in public housing.” Gibbs continues, “Government policy now is to favour those who already own property, through negative gearing and capital gains tax concessions, while doing little to support renters, particularly those on low income. Governments at all levels have also stepped far away from being direct providers of housing, with new public housing falling to its lowest level in 2007.” The Australian Institute of Health and Welfare reports that 36% of social housing tenants are people with disability. The Disability Royal Commission heard that there were “shared experiences of long waiting times for social housing, a mismatch between accessibility needs and the housing offered, and barriers to obtaining modifications”. The Royal Commission has recommended that an increased supply of accessible social housing is important to ensuring people with disability having housing options other than types of supported accommodation such as group homes and supported residential services.
In the absence of social and public housing in a market where disabled people often cannot financially afford private options due to their doubled-rate of unemployment alone notwithstanding the other significant barriers to work, segregated housing has flourished.
The focus on segregated housing has meant that the little government and private investment into creating accessible housing stock has disproportionately gone into these markets rather than the broader housing market. It is a subtle but loud example of segregation practices and embedding those low expectations into the nation’s narrative that disabled people will be housed outside of the broader housing stock.
The National Disability Insurance Scheme, Australia’s landmark social policy to provide funding and supports to people with disability offers three main forms of home and living supports through the provision of Specialist Disability Accommodation (SDA), Supported Independent Living (SIL) and Individualised Living Options (ILO). There are also other funding supports through support coordination, home modification and short and medium term accommodation which I will not go into today.
When it comes to the bricks and mortar of housing, SDA is the only real NDIS game in town. SDA is a range of housing designed for people with, in the words of the law, “extreme functional impairment or very high support needs”. The NDIA self-describe SDA dwellings to “have accessible features to help residents live more independently and allow other supports to be delivered better or more safely”. Unless a Participant is eligible for SDA, the NDIS does not generally directly fund long-term accommodation. As of September 2022, only approximately 3% of NDIS Participants had SDA in their NDIS Plan or 0.4% of the 4.4 million Australians living with a disability.
While SDA plays an important role in providing housing for a small portion of people with disability, the policy development of SDA causes concern with 30% of SDA dwellings, as at June 2022, being group homes. The CRPD Committee have expressed concern that group homes ‘replicate institutional living arrangements’. Group homes are an obvious segregated living option and the continued funding for them, condemns another generation of disabled people to segregated housing.
When disabled people fall ineligible for public, community and social housing or SDA, then they are left with the private rental market. The private rental market in Australia is filled with houses that did not have to meet any accessibility standards and have been built in eras where disabled people were not anticipated to be tenants of the open rental market. The national disability discrimination law does not impose a positive duty on accommodation providers to make housing accessible for people with disability. This leaves people with disability having to ask for adjustments to access properties available on the rental market, leaving a tone that can be unwelcoming, disadvantageous and uncertain. Disability discrimination laws and residential tenancy laws fail to provide sufficient protections when it comes to adjustments. The Disability Royal Commission heard that often provisions under the national Disability Discrimination Act are not invoked successfully by people with disability in relation to accessing or maintaining accommodation.
However, some adjustments like wider doorways for wheelchair users cannot be retrofitted and needed to be addressed by the earlier adoption of basic minimum liveability standards imposed on all private and public dwellings. In 2010, the National Dialogue on Universal Housing Design produced the Livable Housing Design Guidelines which “help governments and the building industry to understand how to incorporate universal design principles into new housing design and construction, and to address the shortage of accessible housing. Adoption of the guidelines was voluntary.” The Guidelines establish three performance levels: silver, gold and platinum.
The National Construction Code 2022 is a design, construction and performance standard for all new buildings and new building work across Australia and is adopted by all jurisdictions except New South Wales and Western Australia. The NCC 2022 has been amended to include liveable housing design requirements, including minimum accessibility requirements which in practice, means reducing steps where possible, more space in the bathrooms, wider doorways and providing for future adaptions such as adding grab rails. However, that does not go far enough and expert disability policy advisor and Policy Manager at the Summer Foundation, Dr George Taleporos told the Disability Royal Commission “we need minimum standards in accessibility in all new housing. We can’t obviously retrofit every house, but moving forward it would be really helpful if houses were built in a way that they were accessible for people”. Dr Taleporos recommended that the Liveable Housing Australia Guideline standard of Gold be applied to all new housing. The gold level introduces liveable housing design elements in areas such as the kitchen and bathroom. The Disability Royal Commission ultimately recommended that state and territory governments should immediately adopt the Liveable Housing Design Standard for all new dwellings, if they have not already done so. It is incumbent upon all builders – public or private, large or small, to build and renovate to the gold standard of the Liveable Housing Australia Guideline to ensure our housing market is accessible for future generations both living in and visiting houses.
While I recognise that people with disability find themselves mostly represented in the private rental market or social and public housing sectors, I cannot and will not talk about the future of housing for disabled people without inclusion of home ownership. I acknowledge that in the current landscape, home ownership is out of reach to many disabled Australians due to economic insecurity. I also acknowledge that home ownership in Australia is becoming rarer for everyone due to the housing crisis. But for people with disability, home ownership has been insufficiently prioritised in public policy and has fallen absent in industry and community conversation. Further, the intergenerational perpetuation of segregated living has been one core barrier to unlocking the achievement of home ownership with those models rarely-almost-never offering a pathway to home ownership even though they are often designed to last a lifetime. The other barrier preventing people with disabilities from owning their own home is, like is the case for private rentals, the lack of accessible housing options available to buy. Modification to existing properties can be expensive and in some cases not practically possible. The low-availability of land to build houses, especially in metropolitan areas coupled with the built-options having low rates of accessibility features locks us out of the market.
The point being that the housing market has been built, literally and figuratively over generations to the exclusion of people with disability and rather than addressing those barriers, governments have sought to continually invest in segregation, perpetuating the idea that there are no houses for disabled people in broader Australia.
Not only is segregation profoundly harmful to those who experience it, it takes generations to phase out. In the recent Disability Royal Commission report, it is predicted to take some 28 years to phase out segregation from schools, workplaces, and housing, and that’s with the ambitious assumption that governments, private industry, and people will adopt the Phase Out Plan immediately and exactly. This means that my friend’s child will not be the generation to live free from segregation; nor their children; but their children’s children may, if all goes to plan, be the first. When I first read that underwhelming timeline, I was outraged. I still am a little outraged. We are going to lose another one, if not two generations of highly valuable disabled people who could otherwise be making our communities, lives and economy richer but instead we will condemn them to the continued, draconian segregation practices in all forms, especially education, employment and housing taking no efforts to immediately cease it or phase it out.
That very disappointing reality, serves as a timely reminder that I want to impress upon all of you – the decisions made now last, and cannot always be easily undone with the stroke of a pen or the change of a government. Buildings, community design and attitudes take time to change so if we build, design or take a view which does not support the active inclusion of disabled people, those subject to that thinking will be stuck living in that reality, while the change occurs. So, we must actively consider now who we want to make up our communities and lives in the future and design our nation with them in mind. We must not create dual systems or different systems for these other people. We need to plan for the active and valued participation of people with disabilities. If we do not, we will continue to move further away in time to when we will be able to do so; we must act now.
By making the models, current and future, available to disabled people because we anticipate disabled people to be active, valued contributors and participants in our society will organically up-end segregation. It creates a new narrative for the nation, not one of charity, dependents, a burden, not the government’s problem. Not one where babies are determined too much for this world before they born, but a narrative of active, valued, great people to have in our community, contributing to our lives. I think that’s the narrative that better fits our nation’s identity built on the fair go, having each other’s back, and just getting it done.
I believe that we can achieve this by investing in and actively adopting disabled leadership. To phase out intergenerational segregation from settings like education, employment and housing we need to be led by people who have experienced it. Even as a disability rights lawyer and public policy expert, I cannot tell you how many times I have thought I knew a topic and then worked with those that have direct lived experience and had my thinking entirely revolutionised. It is why I have focussed today on housing, reflecting my lived experience of segregation.
Segregation is a topic which invokes significant emotion and even more research curated in learned views from experts, but we must be led by people with disability who have lived this and design the way forward with them. While it is tempting to intellectualise these issues, weigh up the costs-benefit analysis and debate the viewpoints of these practices that have existed in our communities forever, we must not take that approach. We know from people who have experienced segregation and spoke, if to no on else, the Disability Royal Commission, that it is a harmful practice needing to end. We also know that it doesn’t have to be this way.
While governments have a significant role in investing in disabled leadership, there is an important role for industry and communities to play too. Having disabled people on your boards, in decision-making roles but also as key consultants to the decision-making process is imperative. Organisations like the Disability Leadership Institute that are disabled-led and run are preparing these leaders I am talking about so that they can walk alongside the Australian community. Of course, accessible housing development and design, social housing distribution and policies to phase out segregation will be imperative to advancing the right to housing for all disabled Australians, but segregated housing practices will not only be solved by policy and government. We need the action of all Australians – Mum and Dad investors, local councillors, neighbours, green space designers, every Australian – to think about how you can ensure disabled people are in and visiting our houses. Actively think when building a house or advertising a rental, “would this be accessible to a person with a disability”? and if you’re not sure how to answer that question, ask disabled people to co-create with you, to advise you. We know how this could all work. We are ready and willing to participate. It has to be you, us, now and together. We cannot wait for another generation, we cannot ignore this any longer. We must, as a nation, end segregation and replace it with equal opportunity to what is on offer.
We can create a better future, free of segregation together by co-creating systems with disabled people. If not to at least help me to tell my mates something slightly less horrifying when they have a baby; but we have got to make the story better for our children and future generations to come. I call upon every Australian to use the space they work, live or play in to create opportunity for disabled people to participate. Join us, disabled people, to create a fair, equal and inclusive nation for all and end segregation for future generations.
Thank you for your time.