Self-Advocacy for Adults with Developmental Disabilities in Ontario: A Plain-Language Guide

If you’re an adult with a developmental disability — or a family member or caregiver supporting one — self-advocacy is one of the most important ideas to understand. It means speaking up for yourself, making your own choices, and knowing your rights; it is also the name of a decades-old civil-rights movement of people who decided they would speak for themselves rather than be spoken for. This guide explains where the movement came from, what “nothing about us without us” really demands, who carries the work in Canada and Ontario today, and how self-advocacy can be taught and supported at home — in plain language, with each claim dated and sourced.

The short version

• Self-advocacy has two linked meanings. At the individual level it is a person speaking up, making their own choices, and knowing and asserting their rights. At the collective level it is a social movement of people with intellectual and developmental disabilities organizing to speak for themselves rather than being spoken for. The two reinforce each other, but they are not the same thing.
• The movement is roughly 55 years old and traces back to Sweden (1968). Self-advocacy grew out of the Scandinavian “normalization” principle and the closing of institutions. The name “People First” was coined at a 1974 convention in Salem, Oregon, when a self-advocate said, “I’m tired of being called retarded — we are people first.” It spread through Britain, Canada, and the US.
• “Nothing about us without us” is the movement’s central demand. Popularized by James Charlton’s 1998 book of that name, the phrase insists that decisions, services, research, and policy be made with disabled people, not for them.
• In Canada, People First of Canada (a 100% member-led national body) is the flagship organization, working alongside Inclusion Canada. In Ontario, self-advocate voice runs through People First of Ontario (currently dormant or under reconstruction at the provincial level), local People First chapters, and the Council of Community Living Ontario. The Ontario story is bound up with the 2009 closure of the Huronia, Rideau, and Southwestern Regional Centres and the Huronia class-action settlement.
• Self-advocacy is a teachable, supportable skill — making choices, expressing preferences, running one’s own meetings, understanding rights, and leading one’s own planning. But families, staff, and agencies have to support without taking over. The persistent friction point is tokenism: inviting self-advocates “to the table” without giving their voices real authority.

What every family should know

1. Two levels, one word. “Self-advocacy” means both an individual skill (speaking up for yourself and your interests) and a collective civil-rights movement of people with intellectual and developmental disabilities. Families and providers should hold both meanings at once: teaching a person to express a preference at dinner and backing the movement that put “nothing about us without us” into law and policy are part of the same project.

2. The movement has a datable origin and a clear lineage. Sweden (1968) → Britain (1972 “Our Life” conference) → British Columbia, Canada (1973) → Salem, Oregon (1974, where “People First” was named). This lineage is well documented and consistent across movement and academic sources.

3. The demand is about power, not just participation. “Nothing about us without us” is not satisfied by a consultation or a token seat. As disability-rights leader Ed Roberts put it, “when others speak for you, you lose.” The real test is whether self-advocates have genuine decision-making authority.

4. The Canadian and Ontario landscape is real but uneven. People First of Canada is nationally active and 100% member-led; People First of Ontario’s provincial web presence is currently a placeholder, though local chapters and the Council of Community Living Ontario carry self-advocate voice. Ending institutions is a live, recent story: Manitoba closed its last institution on December 10, 2024.

5. Language is political. People First frames diagnostic labels as something imposed from outside — hence its self-description as “people who have been labelled with an intellectual or developmental disability.” The related but distinct neurodiversity movement (largely autistic-led, from the 1990s) generally prefers identity-first language (“autistic person”), though that preference is far from universal. The respectful default is to ask individuals what they prefer rather than assume.

6. Support is a discipline. In the movement’s own words, the support person is “advisor, facilitator, and friend,” and “the key to being an effective support person is to support, not control.” Good advisors “help us but do not speak for us.”

What self-advocacy is

Individual self-advocacy is the act of speaking up for yourself and your interests — knowing what you want, expressing preferences, making decisions, and knowing and asserting your rights. A widely used framework describes self-advocacy as “the ability and skills to communicate verbally, in writing, using pictures or gestures on behalf of oneself” to get one’s needs met. It notes that self-advocacy can range “from influencing others to have regard for one’s in-home choice-making, through to choice-making in school, neighbourhoods and occupational settings,” up to “broader societal-level choice-making in civil society actions such as policy participation” (conceptual-framework paper, African Journal of Disability / PMC).

Collective self-advocacy is a social movement — “civil rights movements and mutual aid networks for people with intellectual and developmental disabilities” (Wikipedia, Self-advocacy), in which people organize to advance their own interests. Movement histories (the Minnesota Governor’s Council on Developmental Disabilities / ADA Legacy Project) and the University of Minnesota’s Institute on Community Integration (ICI) stress that “just having IDD does not make you a self-advocate” — the movement is defined by shared values around community inclusion and by working on real goals, not merely by social gatherings labelled “self-advocacy.”

The two levels connect through skill-sharing. As one long-time leader quoted by ICI put it, “Self-advocacy doesn’t just mean advocating for yourself. It’s learning how to advocate for yourself and then pass on your skills to others.”

Where the movement came from

Scandinavian roots and normalization (1968–1969). The movement is generally traced to Sweden in the late 1960s. Bengt Nirje, then executive director of the Swedish Association for Retarded Children (FUB), organized leisure and social clubs for people with intellectual disabilities and, in 1969, articulated the “normalization principle” — in his words, “making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society” (Nirje, 1969, as published in Wolfensberger, The Principle of Normalization in Human Services, 1972). The first self-advocacy conference is dated to Stockholm in 1968, as part of FUB’s assembly (Springer Nature; Autism History Project). Normalization was carried to North America and elaborated by Wolf Wolfensberger (who worked in Nebraska and Toronto, publishing The Principle of Normalization in Human Services in 1972); it became the ideological engine of deinstitutionalization and, indirectly, of self-advocacy. Crucially, the early parents’ organizations operated on the motto “We speak for them” — and it was people with disabilities rejecting being spoken for that sparked the movement.

Britain and Canada (1972–1973). The 1972 “Our Life” conference, organized by Values Into Action (VIA) in Britain, was a catalyst. It inspired a 1973 conference in British Columbia sponsored by the BC ARC (“May We Have A Choice”), described as the first convention for people with intellectual disabilities in North America.

The founding moment — Salem, Oregon (1974). Two staff and three residents of the Fairview Hospital and Training Center in Salem, Oregon attended the 1973 BC convention and came home determined to hold a convention planned by people with disabilities themselves. On January 8, 1974, planning began. As the Arc of the Mid-Ohio Valley’s movement history recounts, “In the course of planning the convention, the small group of planners decided they needed a name for themselves. A number of suggestions had been made when someone said, ‘I’m tired of being called retarded – we are people first.’ The name People First was chosen.” The first People First convention was held in Oregon in October 1974 with 560 attendees; within five years Oregon People First had 1,000 members. Contemporary testimony captures the spirit — self-advocate Valerie Schaaf at the 1974 conference: “I think it’s terribly cruel that we [are] spoken of this way, labeled this way. To me, if you got to label something, label words, label jars, label streets, but don’t label persons.”

Getting out of institutions was the founding fight. The first issue for early self-advocates was the right to live in the community — to get out of institutions. Many founding members were institutional survivors.

Spread and national organizations. By 1975 there were 16 People First chapters in the US. The first International Self-Advocacy Leadership Conference was held in Tacoma, Washington in 1984. In 1990, Self Advocates Becoming Empowered (SABE) was founded as the first US national self-advocacy organization (founding members including Nancy Ward, Roland Johnson, and Tia Nelis; formalized at the 1991/1992 People First conference in Nashville). SABE’s tagline is “Nothing About Us Without Us,” and it launched the “Close the Doors” campaign against institutions (1996); SABE now leads a National Resource Center for Self-Advocacy funded by the US Administration for Community Living.

Canada. According to People First of Canada, “the movement began in 1973 when self-advocates came from all over North America to talk about their rights… By 1974, the first People First chapter was up and running in British Columbia,” made up of people who lived in an institution and wanted to get out. By the mid-1980s there was a national office and staff (the “Self Advocacy Development Project”); by the late 1980s People First of Canada was formally established. A pivotal Canadian figure is Barb Goode: in 1992 she became “the first person with a disability to address the United Nations General Assembly” (posAbilities / UBC Centre for Inclusion and Citizenship), an address tied to the 13th Congress of the International League for Persons with a Mental Handicap; she then became the first self-advocate to join the ILSMH board. Her plain-language memoir The Goode Life: Memoirs of Disability Rights Activist Barb Goode was published by Spectrum Press in 2011. Her rallying line, via Inclusion BC: “We’re the experts and know what we want for our lives.”

“Nothing about us without us”

What it means. The slogan (Latin: Nihil de nobis, sine nobis) demands that no policy be decided without the full and direct participation of the people affected. In disability rights it means decisions, services, research, and policy must involve disabled people directly rather than being made for them.

Where it comes from. The phrase has deep political roots (it is associated with Poland’s 1505 Nihil novi constitution and later democratic mottos like “no taxation without representation”). Its adoption by the disability movement is credited to James Charlton, who wrote in his 1998 book Nothing About Us Without Us: Disability Oppression and Empowerment (University of California Press): “I first heard the expression ‘Nothing About Us Without Us’ in South Africa in 1993. Michael Masutha and William Rowland, two leaders of Disabled People South Africa, separately invoked the slogan, which they had heard used by someone from Eastern Europe at an international disability rights conference.” Disability-rights activist David Werner used the same title for a different 1998 book. The UN adopted the phrase as the theme of the International Day of Persons with Disabilities in 2004, and it shaped the participatory drafting of the Convention on the Rights of Persons with Disabilities (CRPD).

In practice. Charlton frames disability oppression as rooted in “degradation, dependency, and powerlessness”; the slogan’s demand is fundamentally about control and voice. As Ed Roberts said, “If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose.” Knowing and claiming your rights is part of this — see Rights, Accessibility, and Anti-Discrimination Law for Adults with Developmental Disabilities in Ontario for the legal framework behind it.

The organizations today (2025–2026 status)

People First of Canada (PFC) — the national organization “representing people with intellectual and developmental disabilities” and “the national voice for people who have been labeled with an intellectual or developmental disability.” PFC describes itself as “unique in that we are a 100% member-led organization.” It co-founded (with the Canadian Association for Community Living, now Inclusion Canada) the National Task Force on Deinstitutionalization in 2002 (institutionwatch.ca). Recent activity (2023–2025) includes the Invisible Institutions documentary podcast, the documentary film These Four Walls, and a central role in the Manitoba Developmental Centre closure (Task Force Co-Chair Gordon Fletcher was a lead spokesperson in the December 2024 closure announcement). Worth double-checking: PFC’s website (peoplefirstofcanada.ca) has for an extended period shown an “under construction” placeholder (the About page returns only a renovation notice). The most recently confirmed named president is Kory Earle, but a current 2025–2026 president could not be independently confirmed — verify directly with PFC.

People First of Ontario (PFO) — historically the provincial counterpart, “the provincial voice for people who have been labelled with an intellectual disability.” Worth double-checking: its provincial website is a placeholder (“under construction” / “coming soon,” with an informal Hotmail contact address), and no dated 2023–2025 evidence of active province-wide operation was found. Some local chapters (for example, People First of Toronto) and referrals from local Community Living agencies (such as Chatham-Kent) persist, and the international People First site lists “People First of Ottawa – now closed down,” pointing to chapter attrition. Treat PFO as likely dormant at the provincial level with surviving local activity, pending direct confirmation.

Council of Community Living Ontario — Ontario’s other durable channel for self-advocate voice, built into Community Living Ontario’s governance. Its history: a passive Consumer Advisory Committee (1987) was replaced in 1995 by a Self-Advocates Council of ten people (one per region), which later became the Council of Community Living Ontario. Unlike the earlier advisory group, “the Council maintains its own voice… and sets its own agenda.” In a milestone, Michael Jacques, who self-identifies as having an intellectual disability, became president of Community Living Ontario’s provincial board.

How self-advocates take part in governance and system design. In Ontario, self-advocates have moved from being talked about to helping plan and govern. A telling episode: at the 1981 Community Living conference in Windsor, organizers insisted for the first time that people with disabilities help plan the conference and take part in every session — a controversial change at the time. People First advocacy also forced the sector’s name change away from the “R-word”: the national association adopted “community living” in 1986 and Ontario in 1987. In 2004, when Ontario’s Ministry of Community and Social Services set up an advisory body for the final institutional-closure period, advocacy ensured People First and family voices were included through the “Partnership Table” (which ran until it was disbanded around 2018).

Ontario’s institutions and why closing them mattered

Ontario’s last three large institutions — Huronia Regional Centre (Orillia, opened 1876), Rideau Regional Centre (Smiths Falls), and Southwestern Regional Centre (Cedar Springs / Chatham-Kent) — all closed on March 31, 2009. Huronia’s history was marked by extreme overcrowding (2,808 residents when Pierre Berton visited in 1960) and documented abuse. Former residents Marie Slark and Patricia Seth, with litigation guardians Marilyn and Jim Dolmage, launched a class action (certified 2010); it settled for $35 million, approved by the Ontario Superior Court on December 3, 2013 (maximum individual payout $42,000; claims covered residents from 1945 to 2009). On December 9, 2013, Premier Kathleen Wynne apologized in the legislature: “some residents suffered neglect and abuse within the very system that was meant to provide them care.” Parallel settlements followed for Rideau and Southwestern.

This history is why “get out of institutions” was — and remains — the movement’s founding demand. The fight is ongoing, as shown by the December 10, 2024 (Human Rights Day) closure of the Manitoba Developmental Centre — with People First of Canada calling it “a great day in disability rights and the end of a long, hard and well-won fight” — followed by a formal provincial apology on January 23, 2025 (Families Minister Nahanni Fontaine: “I offer my most sincere and heartfelt apology to all former residents… I am profoundly sorry for the harms that you experienced”) and a $17 million class-action settlement (claims deadline June 27, 2024; representative plaintiff David Weremy).

Self-advocacy as a skill you can teach and support

Self-advocacy develops over time, and it can be deliberately taught and supported. Practical building blocks documented across educational and disability sources include:

• Making choices and expressing preferences — starting small (what to eat, where to sit, which activity) and building toward bigger life decisions. Inclusion International’s principle: “Making our own decisions… we must be listened to as we express ourselves, and we must be allowed to make our own mistakes.”
• Self-knowledge — awareness of one’s strengths, interests, and needs, and the difference between wants and needs.
• Communication and assertiveness — having the words (or symbols, pictures, gestures, or scripts) and the confidence to state needs and ask for help.
• Understanding rights — knowing what you are entitled to and how to assert it.
• Speaking in and leading meetings — from attending, to contributing, to co-leading, to leading your own planning meeting. Self-advocates increasingly lead their own planning; the method of person-centred planning is covered separately in Person-Centred Planning and Self-Determination in Ontario: A Family Guide.
• Peer learning and role models — the movement’s own way of teaching. As ICI notes, role models get people saying, “Why am I not doing this? How come you can do that? You have a disability just like I do.”

Development is lifelong and rarely a straight line. The point is graduated opportunity paired with the “dignity of risk” — the right to make and learn from your own mistakes. That balance between real choice and reasonable safeguards is explored further in Dignity of Risk and Safeguarding in Ontario: A Guide for Families and Staff.

Supporting without taking over

The movement is explicit that support must not become control. In the movement’s own guidance (Minnesota Governor’s Council / ICI histories):

• The support person’s role is “advisor, facilitator, and friend”; “the key to being an effective support person is to support, not control.”
• “Good advisors help us but do not speak for us. The best advisors give us the skills and confidence we need. Advisors should be sitting on the sideline and not talk during a self-advocacy meeting unless they’re asked.”

The difference between support and control comes down to who sets the agenda and who makes the decision. Families and staff hold real power (“we still live in a world where people who provide support have a lot of power over us,” ICI), and that power can crowd out voice even with the best intentions. The disability-studies literature contrasts the autonomy model (independent, user-led groups like the UK’s People First, or Sweden’s Grunden) with the “divisional model” (self-advocacy embedded within a parent or provider organization) — the latter risks the supporting organization’s priorities overriding self-advocates’. People First of Ontario’s own history shows the tension: it initially shared office space and clerical support with Community Living Ontario, then deliberately “create[d] distance between the organizations so that they could continue to act autonomously.”

Language, labels, and the neurodiversity movement

Why labels are framed as imposed. People First’s self-description — “people who have been labelled with an intellectual or developmental disability” — deliberately treats the label as something done to people by “families, policy makers and professionals,” not an identity they chose. This runs continuously from the “person first” naming of 1974 through the successful campaign to strip the “R-word” from organizational names.

How it relates to neurodiversity and identity-first language. The neurodiversity movement emerged in the 1990s, largely autistic-led and internet-enabled. The term “neurodiversity” is associated with Australian sociologist Judy Singer, who used it in her 1998 honours thesis “Odd People In: The Birth of Community Amongst People on the Autism Spectrum,” and with journalist Harvey Blume, who popularized it in a September 1998 Atlantic piece (“Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general”). Some scholars (Botha et al., 2024, Autism) argue the concept first appeared in print in Blume’s 1997/1998 writing and was “developed collectively” by the online autistic community rather than coined by Singer alone.

In contrast to the classic People First preference for person-first phrasing, most autistic self-advocates prefer identity-first language (“autistic person”), viewing autism as intrinsic to identity — but the preference is not universal, and it varies sharply by country and study:

• Kenny et al. (2016), the first large-scale survey (3,470 UK autism-community members), found autistic respondents preferred identity-first language — roughly 60% favoured “autistic person” versus about 13% “person with autism” — yet roughly 40% did not endorse “autistic,” showing the split is real.
• A global study of 654 English-speaking autistic adults (Keating et al., 2023) found nearly 80% endorsed “autistic person” while only about 24% endorsed “person with autism.”
• The reverse pattern appears elsewhere: a Dutch study (Buijsman et al., 2023, n=1,026) found 68.3% of autistic adults preferred person-first language.

The two movements share the core commitment (“nothing about us without us”) but diverge on language. The practical takeaway: there is no single “correct” label across the whole community, and community-level majorities differ by language and locale. The respectful default is to ask the individual.

Where families and self-advocates get stuck

• Communication barriers. Information and meetings are often inaccessible; people who use AAC (augmentative and alternative communication) or need plain language get excluded when accommodations aren’t there.
• Low expectations. The old assumption that people with intellectual disabilities are “incapable of playing a meaningful role in society” (Community Living Ontario) still suppresses voice.
• Lack of accessible information. “Information is power,” as People First (UK) frames it; without Easy Read or plain-language information, informed self-advocacy is impossible.
• Exclusion from the rooms where decisions get made. Being absent from where decisions are actually taken.
• Economic and structural barriers. Poverty, unpaid advisory and board positions, and lack of funded support are documented as major barriers to sustained self-advocacy (Scandinavian Journal of Disability Research; ASAN white paper). As one self-advocacy analysis bluntly titles it, “Even a Self-Advocate Needs to Buy Milk.”

Grey areas and points of confusion

• Tokenism versus real authority. This is the sharpest live debate. Self-advocates are increasingly “at the table,” but research finds tokenism is widespread in disability and autism organizations (synthesized research; ASAN). Disability Without Poverty warns: “No one likes to be included as a favour or token gesture… Too often ‘Nothing about us…’ is used by the status quo to preserve the status quo.” The unresolved question is where genuine authority actually lives — advisory input versus binding decision power, a paid seat versus unpaid “invisible labour.” ICI’s benchmark: a real self-advocacy group has goals and works on them; people “sitting around not doing much, or just doing social things” under the label of self-advocacy is “discrimination… under the guise of self-advocacy.”
• Who speaks for whom. People with higher support needs and non-speaking people risk being under-represented even within self-advocacy. Inclusion International’s principle acknowledges this: “We must help those who have higher support needs and cannot speak for themselves, so their decisions can be understood and respected.” How to do this without slipping back into “speaking for” people is genuinely contested.
• Autonomy versus divisional models. Whether self-advocacy hosted inside a provider or parent organization can ever be fully independent is debated; the historical record (People First of Ontario and Community Living Ontario) shows both productive partnership and a felt need to separate.
• Language. Person-first versus identity-first is not settled, and it varies by community, country, and individual. The People First (intellectual disability) tradition and the neurodiversity (autistic) tradition genuinely differ, and even within the autistic community the majority preference flips between English-speaking and some non-English populations.

How current is this, and what to double-check

This guide reflects the movement as of 2025–2026. Two items are actively stale and should be confirmed before you rely on them: People First of Canada’s website is an “under construction” placeholder and its current (2025–2026) president could not be independently confirmed (last confirmed: Kory Earle); People First of Ontario’s provincial web presence is a placeholder with no confirmed active province-wide operation, though local chapters persist. Confirm both directly with the organizations before relying on any org-status claim.

A few more notes on sourcing and precision:

• Source mix. Historical claims (Sweden 1968, Oregon 1974, Charlton 1993/1998, the Ontario closures in 2009, the Huronia settlement in 2013, the Manitoba Developmental Centre closure in 2024) are well corroborated across movement, government, legal, and academic sources. Some movement histories (for example, the exact “we are people first” naming quote) rest mainly on organizational retellings rather than contemporaneous transcripts; they are consistent across independent People First sources but should be read as movement history, not archival record.
• Date precision. The exact day and month of Barb Goode’s 1992 UN address is not documented in the sources located (only the year and event); treat “1992” as firm and the precise date as unconfirmed. The “first person with a disability / with an intellectual disability to address the UN General Assembly” claim rests on advocacy-organization sourcing (posAbilities / UBC, Inclusion BC), not a located UN record.
• Scope. By design, this guide defers depth on the rights and legal framework (AODA, CRPD articles, human rights law — see Rights, Accessibility, and Anti-Discrimination Law for Adults with Developmental Disabilities in Ontario); person-centred-planning methodology; legal capacity, guardianship, and supported decision-making; and communication and AAC methods. These intersect self-advocacy and are referenced only where they connect.
• Numbers. Membership and chapter figures (for example, 560 attendees in 1974; 1,000 Oregon members within five years; 16 chapters by 1975) come from movement histories and are approximate historical figures, not audited counts. The autism-language preference percentages come from named peer-reviewed surveys (Kenny 2016; Keating 2023; Buijsman 2023) and reflect the specific samples studied, not a single global figure.

This is general information about the self-advocacy movement and how to support it, not legal or clinical advice.

Related: Person-Centred Planning and Self-Determination in Ontario: A Family Guide · Rights, Accessibility, and Anti-Discrimination Law for Adults with Developmental Disabilities in Ontario · Dignity of Risk and Safeguarding in Ontario: A Guide for Families and Staff