QUESTION
OF THE
MONTH

Strategize more about supports that are actually community-based, that help communities become more supportive of all people, and help them to support all families, don’t just focus on the neoliberal fantasy of individual contracts for support.

<p style=”text-align: left;”>I am yet to be convinced that the disability constituency need to focus on the care paradigm, or that the concept of care can or should be conflated with the human rights concept of support. The problematic remains that care centres the labour of carers and prioritises a service-based perspective that de-centres autonomy, rights and dignity of persons with disabilities. The language itself continues to frame the rights of persons with disabilities as being dependent upon others, rather than upholding the obligations of states and communities to ensure the requirements of independence and inclusion, these being rights and imposing obligations of respect for the control of rights-bearers (contra ‘service users’). Pragmatic alignment is incredibly worrying here and feels like relying on old stigmas, as opposed to a more principled and human rights-based approach that can empower, inform and drive systems change. Ethics of care, no matter how well-meaning, have led us down paths that we now understand to have reduced, not increased, dignity, equality, justice and inclusion for persons with disabilities. The question to my mind, therefore  is not how to engage the historical wisdom of this agenda, but how to prevent the predictable harms. Damage limitation?</p>

The disability community can strategically engage in discussions on the care economy to advance independent living and community support for persons with disabilities through the following ways:

1. Build coalitions: The disability community should collaborate with other organizations and groups that advocate for the care economy to strengthen their advocacy power. By building coalitions with groups such as care workers unions and other advocates, they can push for policies that prioritize the needs of persons with disabilities.

2. Focus on policy advocacy: The disability community should advocate for policy changes that prioritize independent living and community support for persons with disabilities. Advocacy efforts should focus on policies that increase funding for in-home care services, expand access to affordable housing, and improve transportation options.

3. Increase awareness: The disability community should raise awareness among policymakers, the media, and the general public about the challenges faced by persons with disabilities in accessing quality care. They should use storytelling and personal narratives to show how lack of access to quality care affects their lives, and why it is important to prioritize care services.

4. Engage in research: The disability community should conduct research that highlights the impact of the care economy on persons with disabilities. This research should be used to inform policy discussions and advocacy efforts.

5. Work with policymakers: The disability community should engage with policymakers to ensure that their voices and concerns are heard in policy discussions. They should work with policymakers to create policies that address the unique needs of persons with disabilities, such as flexible work hours and paid family leave for caregivers.
<p style=”text-align: left;”>In summary, the disability community can strategically engage in discussions on the care economy to advance independent living and community support for persons with disabilities by building coalitions, focusing on policy advocacy, increasing awareness, engaging in research, and working with policymakers.</p>

I’d love to hear about examples of good community based practices that do build a supportive environment, and do it in a way that ensures full autonomy of people with disabilities.

Good to see this discussion. I think those working on policy can do more to build on the way that living-together has been imagined and practiced by disabled people and disability communities for as long as we have history.

More recently, the independent living movement and, for example, the disability justice principles formulated by Sins Invalid, have given different visions of how we can live together.

Giving society a new vision of how our interdependence can work, and how we can live in communities together, is potentially the biggest contribution that we as a community can make.

More from me on this in a recent article rethinking care systems with personal experience and the latest policy work.

In addition to what many people have already pointed out, I think it is important also to consider that in certain regions where we are seeing rapid aging, those that are already providing supports to people with disabilities may also increasingly require supports themselves. Many of these people will become people with disabilities. It is for this reason that the idea of community supports is so critical. Discussions on the care economy should recognize this value that the framing around community supports brings to the table.