Ableism Impacts Everything in Human Services and Why that Matters

Written By Kaitlin Aguilar

Pictured: Teen with down syndrome in a woodworking class.

It influences the day-to-day in human services more than we realize.

By Carli Friedman, PhD, CQL Director of Research

This article originally appeared on the Council on Quality and Leadership’s (CQL’s) website and is reproduced here with permission.

It’s not about being politically correct. It’s not about focusing on the negative. It’s not even about emphasizing failures. Paying attention to ableism is the key to quality. From the very beginning ableism has shaped the human services field and we’ve been trying to shake that legacy ever since. But ableism is more than a foundation, it still significantly influences how we operate today. Until we shine the spotlight and work to remove its impacts, ableism will always be a barrier to quality services and disabled people’s quality of life. While I could spend days talking about the important systemic impacts of ableism, today, I want to focus on how it impacts the day-to-day work at human service organizations, on the ground. This is not a calling out, it’s a calling in; the more we learn, the better our service provision.

The Long-Lasting Legacy

While ableism certainly existed prior to institutionalization, ableism played a significant role in institutions. It was one of the first times people with intellectual and developmental disabilities (IDD) were pathologized – it was believed that people with IDD needed to be ‘fixed’ and institutions were supposed to be the answer to doing so (Trent, 1994). While today more people with IDD live in the community than ever before, ableism still influences if people with IDD are institutionalized and if, and how, states prioritize funding for Home- and Community-Based Services (HCBS; Friedman, 2019c; Friedman & VanPuymbrouck, 2019).

Even when disabled people physically live in the community, they are often socially isolated. A lot of the work we do in human services tries to improve that by facilitating community integration. One of the reasons for this continued segregation is the after-affects of institutionalization and other systems and structures. But it also has to do with negative attitudes and stereotypes of disability. Being dehumanized, excluded, and facing ableism while interacting with others in the community makes disabled people feel lonelier and it can increase isolation (Jaiswal et al., 2020; Tarvainen, 2021).

Ableism and Human Services Provision Today

Photo Credit: Rick Guidotti, Positive Exposure, in Partnership with The Foundation for Angelman Syndrome Therapeutics. The Foundation for Angelman Syndrome Therapeutics (FAST) is the leading patient advocacy organization working to cure Angelman Syndrome. As the largest nongovernmental funder of Angelman Syndrome research in the world, their goal is to drive forward transformative research and development programs as quickly as possible for those living with Angelman Syndrome - regardless of age or genotype. Pictured: Quincy, “Quicny lives in New York City with her parents and 2 sisters, Kai and Piper. She has a giggle that lights up a room and loves fashion, swimming, boogie boarding and bubbles.

But ableism isn’t just an external problem that flows into the human service field that organizations need to deal with. It flows within and from it as well. The legacy of institutionalization, as well as general ideas about disability, have shaped and carried over to how human services operate today.

For example, have you ever asked yourself, why do people actually need to be taught to treat disabled people with dignity and respect? Not to imply that doing so isn’t helpful or that dignity and respect isn’t an important topic, but why is this type of education even needed in the first place? Why aren’t disabled people already respected simply because they are people?

In human services there is often a lot of focus on health and safety, but we’re still working on improving person-centeredness, rights, and self-determination. This notion that disabled people need protection rather than support, comes from ableist ideas that disabled people are lacking, less than, need help, and are not capable. We take people’s choices, opportunities, and even rights away from them based on the assumptions about what they are capable of and interested in. For example, we funnel disabled people into low or subminimum wage jobs or don’t hire them in the first place because of these ideas (Friedman, 2019a, 2020). We also assume we know better than disabled people about their own lives than they do themselves. This is all ableism. It relies on stereotypes that associate disability with inability and, thus, makes disabled people responsible for the (unjust) ways we treat them. And it doesn’t even keep them safer. Not only do people have fewer injuries when they have control over their own lives, they also have better quality of life (Friedman, 2023c; Friedman & VanPuymbrouck, 2018).

Here’s an example. If you’re familiar with CQL, you probably know we’re big on what we call the 3Es: Education, Experience, and Exposure. The core idea being that disabled people should have opportunities to make informed choices about their lives, from things big to small. This is a critically important concept, and every disabled person should have these opportunities and receive these supports from organizations. This is very similar with another concept we often talk about in human services: dignity of risk – ensuring disabled people have the opportunities to make choices and take risks. But let’s ask ourselves, why do these concepts even need to exist in the first place? Why aren’t disabled people given choices and opportunities? Why do many disabled people receiving services have limited experiences? When you boil it down, it’s because of ableism. It’s not because people are incapable, it’s because we serve as gatekeepers when we believe people are not capable and when we treat adults like children. We restrict their lives based on our own ableist ideas, even in ways we may not realize.

We Know It’s Bad but What Can We Do About It?

While ableism is a big problem, try not to let that overwhelm you and stop you from getting started. It may actually be more natural to start reducing ableism and its impacts than you realize! In fact, while it may not be explicitly apparent on the surface, if you’ve done any work with CQL you may have already started without realizing it. A lot of the work we do at CQL is implicitly trying to remove these ableist ideas about what disabled people want and are capable of. Here are just a handful of examples that may be good starting places for your work to reduce ableism at your organization:

  • Accreditation can help flip the script from looking at what’s “wrong” with someone or what they’re lacking, to person-centered practices.

  • The Personal Outcome Measures® is a way to learn more about what disabled people care about and ensure they are driving their own lives.

  • Dignity, respect, and rights education and training are important because of the ways ableism can hinder those very areas of people’s quality of life.

  • Organizations should have disabled people play an active role in self-managing their health, to put control back in their hands.

  • By promoting more inclusive boards, we can ensure disabled people are at the table.

  • And research can provide more insights into how ableism works (Friedman, 2019b, 2023b), how it shows up in the world (Friedman & Gordon, 2023), and how it impacts disabled people (Friedman, 2023a), all in order to help reduce it.

Some Final Takeaways to Consider

If we don’t consider ableism in service provision and quality improvement initiatives, we will always plateau. It’s a necessary step to enacting positive change. If you ignore barriers, you’ll never be able to get around them. If you get defensive, it’ll make things harder to change, yourself included. So instead, let’s learn from the lessons of the past and use that knowledge to move forward. Let’s ask questions about what we’re doing and why, and how that may be informed by ableism in ways we didn’t even realize or intend. Let’s envision a world of innovative, high quality services that we’ll be able to create without the burden of ableism holding it back. How can we make that happen? Well, the first step is learning more about ableism. And unlearning more ableism. We’ll be better service providers, and people, for it. 

At the end of the day, ableism is one of the biggest threats to disabled people’s quality of life and outcomes. But looking at that in another light, it also means that by shedding ourselves of ableism in human services, we’ll improve disabled people’s quality of life tremendously, by leaps and bounds.

References


About the author

Carli Friedman, PhD, is the Director of Research for The Council on Quality and Leadership (CQL). CQL is an international not-for-profit organization that is dedicated to the definition, measurement, and improvement of personal quality of life, through a world of dignity, opportunity, and community for all disabled people. Dr. Friedman’s mixed methods research, which is informed by Disability Studies, focuses on ableism, quality of life of disabled people, community integration of people with intellectual and developmental disabilities (IDD), and social determinants of health. She received her PhD in Disability Studies and MS in Disability and Human Development from the University of Illinois at Chicago.

Kaitlin Aguilar
Previous

Medical Aid in Dying: Time for Evidence-Based Legislation
Next

Zazel’s Story: Turning Setbacks into Comebacks