Frontline Initiative: The Diverse Voices of Direct Support Professionals

Author, Matthew Kuriloff

Beloved disability advocate and direct support professional (DSP) trainer, Dave Hingsburger, who we sadly lost last year, often taught us about the concept of social reciprocity. This is the back and forth that happens in communication between two people. Dave Hingsburger emphasized the importance of reciprocity in relationships between people as equals (Lynn et al., 2015). Hingsburger, who used a wheelchair, appreciated when people regarded him with power. He appreciated when people expected him to do things for himself and others. “I can get that myself, thank you,” he would say. “Now may I get one for you, too?”

When we engage in social reciprocity, we are aware of the emotional and interpersonal cues of others. In its simplest form, we practice it when we ask someone how they are doing before a conversation. Social reciprocity is a life skill that fosters independence in the people we support, but it is also an important advocacy tool. It is critically important that we speak up for what we want and need in relationships.

Proud and Supported is a training initiative to provide DSPs with the necessary tools for supporting individuals with intellectual and developmental disabilities (IDD) who identify as lesbian, gay, bisexual, transsexual, queer/questioning, intersex, or asexual (LGBTQIA+). Proud and Supported is administered by NADSP in partnership with The Burton Blatt Institute at Syracuse University and The Autistic Self Advocacy Network (ASAN). It is made possible through funding provided by the New York Developmental Disability Planning (DDPC).The initiative develops and teaches online and in-person trainings on LGBTQIA+ issues targeted at DSPs and the individuals they support. Proud and supported also shares vital resources on its website www.proudandsupported.org , including the comprehensive Definitions and Beyond guidebook created by ASAN (https://autisticadvocacy.org/). Proud and Supported trainings are aligned with our New York State Regional Centers for Workforce Transformation DSP Core Competency Area of Building and Maintaining Positive Relationships when we assist people we support in expanding their social network (Regional Centers for Workforce Transformation, 2021). Unfortunately, initiatives such as Proud and Supported did not exist when I became a DSP. However, I had been an out and proud gay man since I was 17 years old.

My road to becoming a DSP was unexpected and exciting. Almost thirteen years ago, I had the privilege of accidentally becoming a DSP. After a successful run as a real estate agent in New York City, family obligations and the 2008 financial crisis led to my relocation to the East End of Long Island. Originally, I planned to volunteer for East End Disability Associates (EEDA). But, after an intriguing group interview, the opportunity turned into a full-time job supporting people living in a group home. I have had a nearly 13-year career in the field, and an opportunity to develop a unique arts-based day program.

PrideAbility helped me connect with the LBTQIA+ community. It allows me to proudly accept and be comfortable with my gay identity within the context of my professional life.

In fact, my early DSP experiences convinced me that my LGBTQIA+ identity had no relevance in my new career. My ignorance led me to the all-too-common conclusion that people with IDD are perpetual children, devoid of sexuality. The misunderstanding deepened when I heard people I support using derogatory language that landed me back in the closet. I didn't feel comfortable teaching the people I support about why that language can hurt others. It is important for me to be clear that I do not think of this as a failure of the agency, or the system in general. As we know all too well, our society is still learning how to accept people with disabilities. Adding LGBTQIA+ sensitivity can be overwhelming.

I first began focusing on these issues to better support someone served by my agency. The individual was struggling with coming out as a gay and I began connecting with sister agencies to help develop LGBTQIA+ support groups. This work lead to a state-wide movement called PrideAbility which hosts in-person and virtual support meetings throughout New York State. Through collaboration with pride centers and advocacy group, as well as a grant provided by New York DDPC, PrideAbility has continues to grow steadily. PrideAbility meeting lists and other resources are available online at www.prideability.org . Of course, the work was mutually beneficial. PrideAbility helped me connect with the LBTQIA+ community as well. It allows me to proudly accept and be comfortable with my gay identity within the context of my professional life.

As DSPs, we are often so consumed with keeping individuals with IDD safe that the work of supporting people in all of their passions and human complexities seems less significant. But this doesn’t always affirm the full experience of the people we support. Part of our job as DSPs is to support people to build and maintain positive relationships with others. The focus on safety has been reinforced by the COVID-19 pandemic, but the pandemic has also highlighted the emotional and physical dangers of isolation. As a person who enjoys helping others, working with Proud and Supported has reinvigorated my calling as a DSP to support people to understand themselves and develop reciprocal relationships with others. It also serves as an example of social reciprocity at play in my personal and professional life. Supporting others is always an exchange for mutual benefit. My work gives me a paycheck, a livelihood, and a role in society, and my work with Proud and Supported strengthens my connection with the LGBTQIA+ community. In what ways do you find reciprocity in your work as a DSP?

Resources

Lynn, C., Beattie, K., & Hingsburger, D. (2015). Like Ability: 10 Basic skills that promote relationships. The Direct Support Workers Newsletter, 4(3).

Regional Centers for Workforce Transformation. (2021). Direct support professional core competencies.