Positive Approaches Journal, Volume 11, Issue 4

Volume 11 ► Issue 4 ► February 2023

What Are the Barriers to Becoming a Self-advocate: How Do We Perpetuate Them and How Can We Lower Them?

Kyle Chvasta, MSW

What is self-advocacy?

Advocacy is generally defined as the act or process of supporting a cause. For those of us in the disability community, the causes can vary. This includes reducing barriers to programs like Medicaid, to guaranteeing other programs like home and community-based services are well-funded, and to making sure community amenities, like sidewalks and buses are accommodating and accessible. Advocacy is the process to achieve an effective and transformative policy decision through education, direct action, lobbying, and other forms of influence. The goal of an advocacy campaign may be creating a policy decision or to raise awareness of a specific subject. Advocacy can be fluid because it links to shifting priorities for both the advocate and the decision maker.1 And as the built environment, society, and the disability rights zeitgeist are always in flux, as are advocacy priorities. Ideally, the architects of advocacy movements should be those with lived experiences, situated at the intersections and avenues being advocated for. That is self-advocacy. The self-advocacy movement is constructed to ensure that the work to influence policy and practice gets done while reflecting the expressed needs and desires of those in the disability community.

What can self-advocacy look like?

The 1977 Section 504 Sit-in ² & the American Coalition of Citizens with Disabilities is a clear and seminal example of protest and advocacy in action from within the disability community. The Sit-in was a disability rights protest that began on April 5, 1977. The disability community at large occupied federal buildings in the United States to push the issuance of long-delayed regulations regarding Section 504 of the Rehabilitation Act of 1973. Prior to the 1990 Americans with Disabilities Act, the Rehabilitation Act was the most important disability rights legislation in the United States.³ Their coordinated campaigning, lobbying, and direct actions ensured that for the first-time, disabled people had federal civil rights protection. Since then, we have seen the self-advocacy movement grow and expand.

Why is self-advocacy important?

Self-advocacy is needed to advance the rights of disabled people, like the 504 Sit-in and subsequent advocacy initiatives did. Self-advocacy is a direct response to being overlooked in policy planning and implementation. We have seen the self-advocacy movement and the disability rights movement at large emerge in every region of the world, and self-advocates are calling for a recognition of their human rights and campaigning for a central role in determining those rights. ⁴

How do we create healthy self-advocacy spaces?

It is critical for those of us who call ourselves self-advocates to investigate our own work and whether there are access points to those who want to join us. Are the inroads into the world of self-advocacy clear and accessible? Does internalized ableism, racism, and classism impact the spaces we want to create? Are there obvious access points to our advocacy work or does suboptimal messaging close any open doors? Are we missing overlooked corners of our community? Are some needs and desires expressed above others?

Outreach

There is power in numbers. When we work together, we can direct policy and practice into a more just and equitable direction.

How can we increase our coalition? The effective, efficient, clear, and accessible use of various outreach modes is a vital component and the cornerstone of community and advocacy engagement. A suboptimal outreach plan is akin to the thought experiment of “the tree falling in the woods:” If no one knows what our movement is about or that it is even happening, is there a movement? We can form internal committees, host meetings, or write a manifesto. But when a movement consists of a small, insular group of people, it raises questions about viability and success.

It is crucial to conduct regular, accessible, and clear outreach. This means that, on a regular and consistent basis, we are disseminating outreach materials. Sporadic bursts of dissemination do not create or hold an audience. A good example of a group conducting consistent and transparent outreach is the Autistic Self Advocacy Network. Through a dedicated Twitter feed, newsletters, and press releases, they alert their large audience about advocacy opportunities, policy changes, and ways to get involved.

Material accessibility is also a key factor. If outreach messaging is highly academic language, filled with jargon and acronyms, or is difficult to read, it will only court a small group and can alienate others. Prospective participants should be able to easily understand what an advocacy movement is about from a few sentences on outreach materials.

Mode also matters. Digital outreach may seem ubiquitous in 2023, but organizers should consider all options. According to the United States Census Bureau, more than 40 million people in the United States have a disability. But even as most Americans report having certain technology, the digital divide between those who have a disability and those who do not remains. 62% of adults with a disability say they own a desktop or laptop computer, compared with 81% of those without a disability. As for smartphone ownership, there is a 16% gap between those with a disability and those without one (72% vs. 88%).⁵ While social media and other digital forms of outreach can bridge vast geographic divides, these modes may not be as accessible as we think.

Sometimes meeting people “where they are” is also not enough. We should meet people where they live and congregate. This means venturing out to the places and spaces people reside, where people share space, or are taken care of. This may be identifying community centers, as well as trusted community members and leaders who can connect us with the groups and individuals who may be left in the digital chasm of “tech-inequity.” These are the moments where “old-fashioned” portable printed materials could be ideal. Language and cultural considerations are also important. Are we considering people using assistive reading devices? When we conduct outreach through a homogeneous framework and ignore intersectionality, we run the risk of isolating potential advocacy partners. Consider developing outreach materials in multiple languages and working with trusted local advocates who can connect us with communities of various languages.

Welcoming spaces

To build an advocacy movement is to build community. Welcoming and hospitality are parts of a healthy and successful community. The success of movement membership acquisition and retention are deeply rooted in how we build, share, and uphold space with one another. To do this, we must ask ourselves: are the spaces where we host meetings not just accessible to everyone, but are they comfortable, warm, and safe? Accessibility does not simply mean a space meets the most basic accommodation standards for someone with a disability; there are other factors to consider. How is the lighting? Is there enough accommodating space at the table for someone using a wheelchair? Is it a private space for those who may want anonymity? How is the temperature for those with hypersensitivity? Are we prepared to share space with those using assistive communicating technology? Are we amenable enough to make changes if requested? Is there a hybrid or online meeting space option? And if there is, have we exhausted all the accessibility options at our digital meeting space?

Community building also means building relationships and showing curiosity in new members. Social interactions can present unique factors for some of us to navigate and striking up a conversation may not be ideal for all organizers in the disability community. Having a built-in mechanism to “break the ice” can ease nervous energy for those seeking to enter a community or movement. An example of this can be a habitual icebreaker during meetings. Doing this, in conjunction with the caveat that participation is not compulsory, can be helpful. Providing the icebreaker ahead of time can also reduce anxiety. Opportunities for people to introduce and share can truly make people feel seen and heard.

It is also advisable that we be transparent about our mission, vision, practices, and ethics. A clear and concise FAQ page, about us page, or mission statements on websites can scaffold this effort. Clear boundaries are important in building a convivial and safe advocacy space. Understanding and communicating our stance on power dynamics, relationships, roles, and ways in which we interact with one another, is vital.  When there is a lack of clear or ethical boundaries, we risk fostering untenable situations. Formalizing bylaws and codes of conduct can guide us in our work. 

Training and mentoring

A component of building a welcoming space means embracing the opportunity to mentor and train emergent self-advocates. We can open up learning spaces by providing online learning and training materials. As time and resources allow, we can provide professional development, seek, or establish mentoring and training scholarships, and host regular question and answer sessions with potential self-advocates. When people feel as if they are welcomed to learn and ask questions in a safe and supportive environment, we can increase member retention.

Time and Capacity

As stated earlier, advocacy is comprised of education, lobbying, direct action, dissemination, and the general activities of movement building. All of this takes time, which is one of the greatest barriers to advocacy. Time is a commodity few can easily sacrifice. One may be limited by various commitments, doctors’ appointments, transportation logistics and variables, as well as familial and community obligations.

Removing this barrier requires transparency about time commitments and creating opportunities at different commitment levels. If funds allow, pay community members who are actively educating and working with policymakers to supplement any time taken off work or lack-there-of. We can also establish community support funds to offset the labor produced by self-advocates. Creating caring networks to assess and address any barriers self-advocates may face. This can look like establishing care for family members, providing case management for someone seeking healthcare, or other aid. We should also operate with a sense of flexibility. Some people can only participate sporadically, and we should make it clear that a varied level of commitment is acceptable, and they are welcome. If there is a large time commitment, we need to be upfront about that or direct people to alternative less time-consuming ways of getting involved.

Finally, it is vital that we conduct regular wellness checks and help members avoid burnout. Serving as a self- advocate can be a rewarding experience, especially when we see the difference we are making in our collective work. However, if we are constantly giving and not taking time to refill our cups, we put ourselves at risk for burnout. We do not want to place people in a state of physical or emotional exhaustion, accompanied by a loss of passion for the work. Once these and other factors are considered, we can begin to safeguard our collective work and take the important next steps of regularly evaluating our privilege and ensuring our self-advocacy work is intersectional. These simple recommendations can hold water. In the meantime, it is important we start from a place where we are evolving, questioning, and investigating how we can dismantle barriers to self-advocacy.