Advocacy and Self-Advocacy
All disabled people have the right to speak for themselves and participate in decisions affecting their lives. This page centers disabled people’s expertise in advocacy and provides practical guidance for self-advocates and allies organizing together.
Where Are You?
Section titled “Where Are You?”Jump to:
- Understanding Advocacy
- Self-Advocacy Fundamentals
- Systemic Advocacy
- Resources by Country
- Building Skills
Understanding Advocacy
Section titled “Understanding Advocacy”What Is Advocacy?
Section titled “What Is Advocacy?”Advocacy means speaking up—for yourself, for others, or for change. Disabled people have always advocated, though systems have often tried to silence that voice.
Self-advocacy: Speaking up for yourself, asserting your needs, making decisions about your own life.
Individual advocacy: Supporting another person to have their voice heard (while ensuring they remain in control).
Systemic advocacy: Working to change policies, laws, and systems that create barriers.
”Nothing About Us Without Us”
Section titled “”Nothing About Us Without Us””This principle, central to disability rights movements worldwide, means:
- Disabled people must be in decision-making roles on disability issues
- Policies should be created with meaningful disabled input, not just consultation
- Disabled people are experts on disability
- Organizations serving disabled people should be led by disabled people
Why this matters: When non-disabled people make decisions for disabled people—even with good intentions—they often get it wrong. Professionals, parents, and policymakers have created systems that harm disabled people when disabled voices were excluded.
Self-Advocacy Fundamentals
Section titled “Self-Advocacy Fundamentals”Knowing Your Rights
Section titled “Knowing Your Rights”Self-advocacy starts with knowing what you’re entitled to. In different contexts, this means:
Healthcare:
- Right to informed consent
- Right to accessible communication
- Right to have your decisions respected
- Right to second opinions
- Right to your medical records
Employment:
- Right to reasonable accommodation
- Right to privacy about disability (in most contexts)
- Right to apply based on qualifications, not assumptions about disability
Education:
- Right to accessible learning environments
- Right to accommodations
- Right to participate in decisions about your education
Government Services:
- Right to accessible formats
- Right to reasonable modifications
- Right to participate in processes affecting you
Know your specific rights by checking:
- Your country’s disability laws (see Global Overview)
- Your country’s human rights framework
- Sector-specific regulations (education, healthcare, housing, etc.)
Speaking Up for Yourself
Section titled “Speaking Up for Yourself”In conversations:
Prepare: Before important meetings, write down what you want to say. Practice if helpful.
Be direct: “I need…” is clearer than hints or hoping others will figure it out.
You don’t owe explanations: You can say what you need without justifying your disability.
Ask questions: “What are my options?” “What happens if…?” “Who else should I talk to?”
Get it in writing: After important conversations, follow up with email summarizing what was agreed.
When you’re not getting what you need:
Escalate: Ask to speak with a supervisor or decision-maker.
Document: Keep records of dates, names, what was said, what was denied.
Know your appeals: Most systems have processes to challenge decisions.
Get support: Advocates, lawyers, disability organizations can help.
Common Scenarios
Section titled “Common Scenarios”Scenario 1: You need an accommodation at work
You have a right to reasonable accommodation. You don’t have to disclose your specific diagnosis, but you do need to explain what you need and why.
Steps:
- Make request to supervisor or HR in writing
- Propose specific accommodation
- Be open to interactive process—employer may suggest alternatives
- If denied, ask for reason in writing
- Appeal or seek legal assistance if needed
Scenario 2: A service provider won’t accommodate you
You have rights under disability discrimination laws. But sometimes you need quick solutions.
Options:
- Ask to speak with a supervisor
- Explain what you need and why
- Reference the law (this sometimes helps without needing lawyers)
- File formal complaint
- Seek legal assistance
- Document and report to disability rights organizations
Scenario 3: You’re not being taken seriously in healthcare
Medical gaslighting—where providers dismiss your experiences—is extremely common for disabled people.
Strategies:
- Bring a support person to appointments
- Come with documentation of your symptoms
- Ask providers to document their refusal to pursue tests or treatments in your records
- Request second opinions
- Find providers who have experience with your condition
- Use patient advocacy services if available
Scenario 4: Someone is making decisions without your input
Whether it’s family members, guardians, or service providers—you have the right to be heard.
Assert yourself:
- “I need to be part of this conversation”
- “Please talk to me directly, not about me”
- “This is my decision to make”
- If someone else legally makes decisions for you, you still have a right to express preferences
When Self-Advocacy Is Hard
Section titled “When Self-Advocacy Is Hard”Self-advocacy is work, and it’s not always possible or safe.
When you’re exhausted: It’s okay to not fight every battle. Pick what matters most. Get others to help.
When there are power imbalances: Sometimes advocating has real risks—losing services, damaging relationships, facing retaliation. Assess your situation and protect yourself.
When communication is a barrier: Self-advocacy doesn’t require speaking verbally. Use AAC, written communication, support people—whatever works for you.
When you have cognitive or psychiatric disabilities: Systems often dismiss self-advocacy from people with certain disabilities. This is discrimination. You can advocate for yourself, and supporters should help you do so rather than speaking over you.
Systemic Advocacy
Section titled “Systemic Advocacy”Moving from Individual to Systemic
Section titled “Moving from Individual to Systemic”Individual self-advocacy addresses your immediate needs. Systemic advocacy changes the systems that create barriers for everyone.
Example transformation:
- Individual: “I need accessible parking at this building”
- Systemic: “All buildings should be required to have accessible parking”
Both are necessary. Systemic change makes individual advocacy less necessary—and less exhausting—for future disabled people.
Types of Systemic Advocacy
Section titled “Types of Systemic Advocacy”Policy advocacy: Changing laws, regulations, and policies at local, national, or international levels.
Community organizing: Building power among disabled people to demand change collectively.
Legal advocacy: Using courts to establish rights and enforce laws.
Public education: Changing how people think about disability to create conditions for change.
Direct action: Protests, demonstrations, and civil disobedience that draw attention to injustice.
Skills for Systemic Advocacy
Section titled “Skills for Systemic Advocacy”Understanding systems: How does a bill become a law? Who makes decisions about this policy? What’s the budget process? Understanding how systems work tells you where to apply pressure.
Coalition building: Systemic change usually requires organizing—connecting with other disabled people, allied organizations, and broader movements.
Strategic communication: Messaging matters. How do you frame disability issues in ways that build support? When do you tell personal stories, and when do you lead with data?
Documentation and research: Change often requires evidence. Documenting problems, gathering data, and presenting credible information strengthens advocacy.
Direct action: Sometimes change requires disruption. Disability movements have a rich history of protests, sit-ins, and civil disobedience.
Cross-Movement Solidarity
Section titled “Cross-Movement Solidarity”Disability rights connects to other movements:
- Racial justice (disabled people of color face compounded discrimination)
- LGBTQ+ rights (many LGBTQ+ people are disabled; disability community includes diverse identities)
- Economic justice (poverty and disability are deeply connected)
- Immigration rights (disabled immigrants face particular barriers)
- Environmental justice (disabled people disproportionately affected by environmental harm)
- Prison abolition (incarceration and psychiatric institutionalization intersect)
Building solidarity means supporting other movements while bringing disability perspectives to those spaces.
Resources by Country
Section titled “Resources by Country”United States
Section titled “United States”Self-Advocacy Organizations:
- Self Advocates Becoming Empowered (SABE): National organization led by people with intellectual and developmental disabilities
- Autistic Self Advocacy Network (ASAN): By and for autistic people
- National Federation of the Blind: Blind people’s self-advocacy
- National Association of the Deaf: Deaf community advocacy
Systemic Advocacy Organizations:
- ADAPT: Direct action organization for community living
- Disability Rights Education and Defense Fund: Legal advocacy
- National Council on Independent Living: Network of CILs
- American Association of People with Disabilities: Cross-disability
Individual Advocacy Support:
- Centers for Independent Living (find local CIL)
- Protection and Advocacy (P&A) agencies in each state
- Client Assistance Program (CAP)
Training Programs:
- Partners in Policymaking
- Self-Advocacy Leadership Network
- Various state-level training programs
Canada
Section titled “Canada”Self-Advocacy Organizations:
- People First of Canada: People with intellectual disabilities
- Council of Canadians with Disabilities: Cross-disability national organization
Systemic Advocacy:
- ARCH Disability Law Centre (Ontario)
- Disability Alliance BC
- Provincial disability organizations
Individual Support:
- Independent Living Canada (network of ILCs)
- Provincial advocacy services
United Kingdom
Section titled “United Kingdom”Self-Advocacy Organizations:
- Self-advocacy groups for people with learning disabilities (throughout UK)
- National Survivor User Network: Mental health
Systemic Advocacy:
- Disabled People Against Cuts (DPAC)
- Inclusion London
- Disability Rights UK
Individual Support:
- Citizens Advice
- Local advocacy services
- Disability charities (though not all are user-led)
Australia
Section titled “Australia”Self-Advocacy Organizations:
- Self Advocacy Resource Unit (SARU): Victoria
- Various state self-advocacy organizations
Systemic Advocacy:
- People with Disability Australia
- Women With Disabilities Australia
- First Peoples Disability Network
Individual Support:
- NDIS advocacy services
- Disability advocacy organizations by state
Other Countries
Section titled “Other Countries”Find organizations in your country:
- Disabled Peoples’ International (global network)
- International Disability Alliance members
- Search: “[your country] disability rights organization”
- Search: “[your country] disabled people’s organization”
Building Skills
Section titled “Building Skills”Self-Advocacy Skills
Section titled “Self-Advocacy Skills”Start small: Practice in lower-stakes situations before high-stakes ones.
Know your communication style: Some people advocate best verbally, others in writing. Use what works for you.
Find mentors: Connect with other self-advocates who can share experience.
Join groups: Self-advocacy groups provide support, training, and community.
Practice saying no: “No” is a complete sentence. You don’t have to agree to everything.
Practice asking questions: “Can you explain that?” “What are my options?” “What if I need something different?”
Systemic Advocacy Skills
Section titled “Systemic Advocacy Skills”Learn your history: Understanding how change happened before helps you understand how to create it now.
Study organizing: Labor organizing, civil rights movements, and disability rights movements all have lessons.
Build relationships: Change happens through relationships. Know who makes decisions and how to reach them.
Tell stories effectively: Personal narrative can be powerful, but strategic storytelling is a skill.
Understand policy: Learn how laws and regulations are made and changed.
Practice public speaking: Whether testifying at hearings or talking to media, communication matters.
Training Opportunities
Section titled “Training Opportunities”Self-advocacy training:
- Self Advocates Becoming Empowered (US)
- Partners in Policymaking programs
- Independent Living Skills training at CILs
- Local self-advocacy groups
Leadership development:
- RespectAbility (US)
- Disability rights fellowships
- State and national leadership programs
Organizing skills:
- ADAPT trainings
- Community organizing programs
- Labor organizing schools
Online Resources
Section titled “Online Resources”Learning materials:
- Self-advocacy curricula (many available free online)
- Webinars from disability organizations
- YouTube channels from self-advocates
Community:
- Disability advocacy groups on social media
- Online support communities
- Professional networks
Supporting Someone Else’s Self-Advocacy
Section titled “Supporting Someone Else’s Self-Advocacy”If You’re a Support Person
Section titled “If You’re a Support Person”Your role is to support self-advocacy, not replace it.
Do:
- Ask what kind of support the person wants
- Follow their lead
- Help them prepare rather than speak for them
- Amplify their voice
- Respect their decisions even if you disagree
Don’t:
- Speak for someone without their consent
- Make decisions for them
- Undermine their autonomy
- Assume you know what they need
If You’re a Professional
Section titled “If You’re a Professional”Do:
- Ask people what they need rather than assuming
- Provide information so people can make informed decisions
- Make communication accessible
- Respect decisions you disagree with
- Support people to advocate for themselves
Don’t:
- Talk over disabled people
- Assume incapacity
- Prioritize efficiency over autonomy
- Dismiss concerns
- Block access to advocacy organizations
If You’re a Family Member
Section titled “If You’re a Family Member”Do:
- Support your family member’s voice
- Help them access information and resources
- Connect them with other self-advocates
- Respect their growing independence
- Let them make mistakes and learn
Don’t:
- Speak for them without consent
- Make decisions without including them
- Dismiss their preferences
- Isolate them from other disabled people
- Prioritize your comfort over their autonomy
When Advocacy Doesn’t Work
Section titled “When Advocacy Doesn’t Work”Sometimes you do everything right and still don’t get what you need. Systems are imperfect, discrimination exists, and power imbalances are real.
This isn’t failure: You can advocate perfectly and still not succeed. This reflects systemic problems, not personal inadequacy.
Know when to escalate: If informal approaches don’t work, consider formal complaints, legal action, or media attention.
Collective power: Individual advocacy has limits. Systemic change requires organizing together.
Protect yourself: If advocacy puts you at risk, protect yourself first. Live to fight another day.
Find community: Other disabled people understand. Connect with community for support and solidarity.
Help Build This Page
Section titled “Help Build This Page”What self-advocacy strategies have worked for you? What training programs or resources should be listed? What’s missing about advocacy in your country?
Share through our [contribution form] or email wiki@disabilitywiki.org.
Related Pages:
- Global Overview of Disability Rights
- International Rights
- History of Disability Rights
- Community Organizing
Contribute to This Page
Section titled “Contribute to This Page”Have lived experience or expertise that could strengthen this page? We especially welcome perspectives on models not well represented here, including those from the Global South and Indigenous communities.
This page centers disabled people’s expertise and is informed by disabled-led organizing globally. For questions or to suggest additions, see How to Contribute.