For almost three years, a United Nations draft asked governments to accept disability as part of human diversity. Then the wording changed. The final treaty asked them to accept persons with disabilities as part of human diversity. After 18 years working at the United Nations, I know how much work can go into changing a few words. It’s a small edit with a practical consequence. Accepting an idea takes a sentence. Accepting the people takes a timetable, a budget and someone answerable for both.
I lived in the United States for seven years, and both my children are American. When I ask what belonging looks like in everyday life, I have Australia and the United States in mind.
What it means to call disability human diversity
Human bodies and minds vary. So do our senses, stamina and ways of communicating. In Australia’s 2022 Survey of Disability, Ageing and Carers, 5.5 million people had disability. That’s 21.4% of the population. Among people aged 65 and older, the figure was 52.3%. A tram system, a classroom or a job application designed on the assumption that disabled people will rarely turn up is working from a peculiar idea of who lives here.
There are two claims in the phrase. The first is about human variation. The second is about standing. Disabled people have the same claim on public life as anyone else, and that claim holds however someone feels about their impairment. A person can want treatment, need extensive support and expect to have a say in how the places they use are run. The decisions about those places are somebody’s to make. The question is who gets to make them.
In the British social-model tradition, impairment describes a bodily or mental difference and disability describes the exclusion that occurs when society is organised around a narrow set of abilities. The Union of the Physically Impaired Against Segregation (UPIAS) put the responsibility squarely on society in Fundamental Principles of Disability, published in 1976 after a discussion the previous year. Think of a person who can get to a railway platform and has no way to board the train. There’s a decision about the height of that platform and the floor of that carriage. A diagnosis tells you very little about who made it.
Identity is another matter. Some people find a home in disability culture or organise under the word disabled. Others primarily encounter the label on an application form. The treaty uses “persons with disabilities”. This article generally uses “disabled people”, with room for the words people choose for themselves.
How the UN treaty found its words
The earliest dated example of the treaty wording located for this article is the text produced by a UN working group in January 2004. The draft called for “acceptance of disability as part of human diversity and humanity”. That date gives us a point in the documentary record. The first person to use the phrase, and the first use of the shorter wording “disability is human diversity”, remain unknown.
A regional draft from Bangkok in October 2003 had recognised a “right to be different”. Writing at the time for ABILITY Magazine, Maya Sabatello reported disagreement over making that a separate right. By August 2004, a UN daily summary recorded Costa Rica’s argument that disability should be understood as part of human diversity. That’s a summary of the intervention. The delegate’s precise words may have been different.
The wording about accepting disability was still there in the committee’s September 2006 interim report. By the November draft final report, the object of acceptance had become persons with disabilities. The reason for that edit remains unclear. What it does to the sentence is plain enough. It puts people at the centre of Article 3(d) of the Convention on the Rights of Persons with Disabilities. The UN adopted the convention on 13 December 2006. It entered into force in May 2008, and Australia ratified it that July. The UN’s account of the convention and Australia’s treaty record trace those dates. The United States signed on 30 July 2009 and has yet to ratify the convention. In December 2012, the U.S. Senate voted 61–38 in favour, short of the two-thirds majority needed to give its consent.
The argument is older than the wording
Disabled activists were already asking who set the terms of public life long before the UN negotiated that sentence. UPIAS moved the question from an individual’s body to the way society was organised. In the United States, Harlan Hahn argued for treating disabled people as a minority with civil rights claims. Irving Kenneth Zola approached it through the life course. If people’s abilities change across a lifetime, why design public policy for a population that supposedly stays the same?
The 1992 amendments to the US Rehabilitation Act described disability as a natural part of human experience and affirmed disabled people’s right to participate in society. In 1997, Richard Scotch and Kay Schriner proposed building disability policy around human variation. After the convention, Theresia Degener’s human rights model took the argument further. A person’s dignity holds even where an impairment makes life harder. You can build policy around human variation and still owe someone support specific to their body and circumstances.
Who gets to decide what inclusion costs?
Picture a diversity committee with a glossy strategy, no disabled members and no budget. It can release the strategy on time. It can report that it released the strategy on time. The person who needs an adjustment still has to find out whom to ask.
Sara Ahmed studied this pattern in university race-equality work. As Meryl Altman’s review of On Being Included explains, an institution can treat having a policy as evidence that it has dealt with the problem. The same habit shows up in disability access. A complaints form gives an organisation something to point to, even when the person trying to use it needs help getting through the form itself. URevolution has covered how workplace diversity efforts leave disabled workers out.
The business case has its own limit. A 2018 Accenture study found that the companies it classed as disability inclusion leaders performed better on several financial measures than the other companies studied. That’s a comparison, and it gives a manager something to take into a meeting. Try making the same pitch for someone who will always need paid support and whose claim on public money cannot be made to look profitable.
“Nothing About Us Without Us” gives us a better question for the meeting. James Charlton heard the slogan from South African disability activists in 1993 and wrote about the power to direct decisions that affect your life. A seat on a panel may give somebody a microphone for ten minutes. Who can change the proposal after the panel goes home?
Pain, treatment and the right to belong
Some impairments hurt. Some conditions get worse. A person with severe ME/CFS who would take an effective treatment tomorrow has every reason to be wary of anyone telling them to celebrate human variation. When a newspaper column argued that some disabled people don’t want a cure, participants on the Science for ME forum described how poorly that framing fitted their own illness. Their responses tell us what those readers thought. Disability contains plenty of disagreement about cure, including within the same condition.
Liz Crow argued that activists defending the social model could make it hard to talk about pain and fatigue. She wanted room for the whole experience. Susan Wendell asked how disability politics would change if it took chronic illness and poor health seriously. And in Brilliant Imperfection, Eli Clare wrestles with a culture that treats cure as an obligation while acknowledging what medical technology has made possible in his own life.
A person can want relief and expect access this afternoon. That includes someone whose assistance is intimate, expensive or needed every day. The disability scholar Jenny Morris made a useful distinction about independence. What matters is control over how help is provided. Being able to decide who assists you, when they arrive and what they do can matter much more than whether you can manage alone.
There’s another expectation that wears people out. Stella Young’s argument about inspiration was about who gets to decide what a disabled person’s ordinary life means. A person can have a rotten day, ask for a change and expect to be taken seriously throughout.
Belonging means being able to come back
Getting through the door once tells you that somebody found a way to get you through the door once. Can you come back next Tuesday? Can you take part in the meeting without explaining your medical history to a new organiser? Can you change how the meeting works?
Mia Mingus calls it access intimacy when somebody understands what access means for you without making you explain it from scratch. She also writes about forced intimacy, when getting assistance or accommodation means exposing personal information or letting a stranger get physically close. Annika Konrad’s work on access fatigue gives a name to what happens when the work of arranging access keeps coming back to the same person. After a while you may decide to stay home. The organiser sees an empty chair.
In Australian Disability Network research published in 2024, 56% of employees with disability surveyed said they feared being treated differently if they asked for an adjustment. It’s a good reason to be careful with the phrase “all you have to do is ask”. Asking can mean telling your manager something you’d prefer to keep private, with no certainty about how either the request or the disclosure will be handled.
There’s a harder version of that conversation when the decision concerns your income. In 2020–21, about 57,000 of roughly 96,000 claims for the Disability Support Pension were rejected, SBS reported that year. That is a snapshot of decisions in one year. It says nothing about the outcome of an individual application today. It does tell us how often people made it through the process without getting the payment they applied for.
Even lodging a complaint takes time and confidence in what will happen next. The Australian Institute of Health and Welfare reports that the share of disability discrimination complaints successfully resolved by conciliation fell from 72% in 2020–21 to 59% in 2024–25. In the latter year, the figure was 78% for complaints about access to premises and 47% for employment complaints. Those figures are about complaints that reached the system. Think about the empty chair again.
The Disability Royal Commission put the question of who decides on the public record. In 2023, three commissioners recommended phasing out segregated schooling by 2051. Other commissioners favoured retaining specialist schools. Four supported a separate recommendation to end segregated employment by 2034. The government’s 2025 progress report recorded that recommendation as subject to further consideration. Belonging changes shape depending on whether someone gets to choose where they learn and work, and on what support follows them there.
What the default decides
The tram that has to turn up
In March 2025, 29% of Melbourne tram stops offered level access, according to the Victorian Auditor-General’s follow-up audit. In 2023–24, 18% of services paired a low-floor tram with a level-access stop. That 18% measures the combination at a stop. A whole journey also needs somewhere suitable to get off.
The end of 2022 was the compliance deadline for tram stops under the transport standards. The audit found that Victoria’s transport department expected to miss the 2032 deadline for trams under its existing plans and could give no date for full compliance. For a passenger, the timetable only helps if the right tram meets the right stop at both ends. Then the trip home has to work too.
New York has its own version of that problem. In a 2022 settlement with disabled riders and advocacy groups, the Metropolitan Transportation Authority committed to making at least 95% of the 364 subway stations that were inaccessible at the time accessible by 2055. A station can have a lift on the map. On the day you need it, that lift has to work, and so does the one at the other end.
The train that came back to the workshop
In 2018 the Australian Human Rights Commission refused most of the temporary exemptions sought for Queensland’s New Generation Rollingstock trains. The issues included the accessible toilet and getting to it from elsewhere on the train. Queensland’s Department of Transport and Main Roads says all 75 trains had been modified and returned to service by July 2024. Among the upgrades was a replacement toilet module with a larger footprint.
A passenger needs a toilet they can reach on the trip they’re taking. There’s an opportunity to deal with that when the buyer specifies the train, when the design is checked and when the train is accepted into service. By the time somebody is arguing for an exemption, passengers are already living with the decisions made at those earlier points.
The office, the website and the classroom
Working from home was treated as an exception in many offices before 2020. The pandemic made it ordinary for roles that could be done remotely. In a later survey of almost 5,000 public servants, nearly two-thirds of respondents with disability reported feeling more productive at home. The researchers warned that a broad push back to the office could reverse some of those gains. When flexible work goes back on the exceptions list, the employee goes back to making a case for an arrangement the office already knows how to run.
In 2000, Bruce Maguire, who is blind, complained that he couldn’t use parts of the Sydney Olympics website with his braille display. The organising committee argued that fixing the site would take 368 working days and cost A$2.2 million. The commission rejected its unjustifiable-hardship argument in that case and later awarded Maguire A$20,000. The W3C case study documents what was inaccessible and what the committee was asked to fix. The question for a new service is simple enough. Who tries it with a screen reader before the launch date?
In the United States, a Department of Justice rule under the Americans with Disabilities Act sets a technical accessibility standard for state and local government websites and apps. Think about renewing a driver’s licence or paying a water bill. Can you find the form, fill it in and get confirmation using a screen reader? That’s the public service, from the person using it.
The same question works in a classroom. If the whole class has to watch a video and write about it by Friday, are accurate captions and a transcript available when the video goes up? A student can still need an individual adjustment. They can also get on with the same assignment as everybody else while that request is being dealt with. CAST’s Universal Design for Learning guidelines put the learner’s ability to direct their own learning at the centre. A usable video is one small way of making that possible.
When access needs collide
Suppose a community meeting uses lighting that makes it easier to see someone’s face and read their lips. The same lighting may make it harder for someone with migraine to stay in the room. There’s no vote that settles which person needs access more. Ask what would work. A different seating arrangement might help. So might lighting that can be adjusted in different parts of the room, or live captions alongside the spoken discussion. The answer depends on the people there and what they need to do together.
The philosopher Corinne Lajoie describes how systems set up to process individual accommodations can struggle when disabled people share a space and their needs differ. The people who use the room have knowledge worth paying for before anyone orders the lights or signs the venue contract.
The Principles of Universal Design talk about making things usable by as many people as possible. That last qualification matters. A conventional accessible toilet still leaves some people without the facilities they need. A Changing Places facility provides equipment such as a hoist and an adult change table. Calling the ordinary toilet accessible doesn’t make it possible for someone to transfer out of their chair. Putting the other facility in a building where it can actually be reached might. URevolution has explored what inclusive design asks of designers.
Whose idea of disability counts?
A form can ask for one tidy account of disability from somebody whose life runs across languages, services and family responsibilities. In the ABS’s 2022 data, 25.3% of Aboriginal and Torres Strait Islander people living in households had disability. Damian Griffis, a Worimi man then speaking as chief executive of the First Peoples Disability Network, described the pressure to adopt a disability label to get services. His point raises a question about the service. How much of a person’s own account can it hear before it insists on its own terms?
The rules about who gets to stay in Australia set another boundary. The Department of Home Affairs describes how the visa health requirement can take projected costs and the availability of services into account. It also sets out special consideration for some children born and ordinarily resident in Australia. The rules vary with the circumstances. What stands out here is how easily a person can become a projected cost on somebody else’s spreadsheet.
Access also looks different to a person who relies on somebody else for daily care and to someone whose main barrier is a train with a step. For both, control matters. And the harder it is to leave a service, find another provider or get home independently, the more it matters who can complain safely and whose account is believed.
Who the kerb ramp is for
A kerb ramp is handy if you’re pushing a pram or hauling a trolley. Angela Glover Blackwell called that spillover the curb-cut effect. The term makes it easy to remember how a change fought for by disabled people can become ordinary public infrastructure. The story behind it can get tidied up. Berkeley accounts give different dates for early official kerb cuts. And Eric Dibner, who worked with Berkeley disability activists, recalled putting down cement to make a kerb usable. There’s a disabled person who needs to get over the kerb and somebody who knows how to change it. The practical work is interesting enough.
Then think of an Auslan interpreter at a council meeting, or the adult change table in that public toilet. Their value is clearest to the people who need them. Sins Invalid’s disability justice principles place human worth outside any calculation of how much someone produces. The same goes for how widely other people happen to benefit from the access someone needs.
In 2006 the UN put people into the sentence. In 2025 Victoria’s Auditor-General still couldn’t get a date for a tram network those people could use reliably. A promise of belonging should be able to answer the passenger at a tram stop in Melbourne or the top of the subway stairs in New York. Can I get there, and how am I getting home?
Explore URevolution’s Disability Is Human Diversity collection.
AI transparency
While AI assisted with tasks ranging from research and outlining to proofreading and asset generation, this article was directed, written, and edited by a human: me, Brendan McDonald.
