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By Rohmteen Mokhtari, ACL Public Affairs
Pride month is a time of celebration for the lesbian, gay,
bisexual, transgender, and queer (LGBTQ+) community - including the many
LGBTQ+ people with disabilities. It also is a time to honor the impact and
sacrifice of early advocates for LGBTQ+ rights, and those who continue
the fight today. Finally, it is an opportunity to recognize the challenges
to equity and inclusion that are still faced by many in the LGBTQ+
community, which can be even greater for LGBTQ+ people of color and LBGTQ+
people with disabilities. These barriers can be particularly pervasive for
LGBTQ+ people with intellectual and developmental disabilities, who often
feel out of place in both the LGBTQ+ and disability communities.
ACL is committed to ensuring our programs and research reflect
the true diversity of our country and are responsive to the needs of all we
serve, and several ACL initiatives are specifically working to learn more
about, and to address, the unique needs of LGBTQ+ individuals with
disabilities, particularly IDD. For example:
- Our National Institute on
Disability, Independent Living, and Rehabilitation Research (NIDILRR)
funds a variety of projects, including one
working with LGBTQ+ autistic adults to identify barriers to
community participation and supports to address these barriers.
- ACL-funded State Councils
on Developmental Disabilities in Washington, D.C., Michigan and New
York are supporting projects that work directly with LGBTQ+ people
with IDD.
- Also funded by ACL,
University Centers for Excellence in Developmental Disabilities
(UCEDDs) around the country are working to ensure people with IDD have
access to appropriate and inclusive sexual health information. For
example, Oregon's UCEDD has even developed a resource
hub with videos, training tools, and more.
We are proud of these programs and their pioneering work to
improve the lives of LGBTQ+ people with disabilities, and we are looking
forward to sharing the knowledge and lessons learned so they can be adopted
by other programs and communities.
As part of our Pride Month celebrations, we talked with
several people with lived and professional experiences about the challenges
faced by LGBTQ+ disabled people, misconceptions about people with IDD and
sexual health, future directions of research, the importance of pride and
community, and more. We spoke with:
- Jean P.
Hall, PhD, the
Director of the Institute for Health and Disability Policy Studies and
the Research and Training Center on Independent Living at the
University of Kansas. She has conducted research, funded by NIDILRR,
on health outcomes of LGBTQ+ people with disabilities.
- Alex
Jusko, a self-advocate with
cerebral palsy who serves as a life coach, as well as a Marketing and
Community Outreach Associate for People Inc. in Buffalo, New York. In
2013, he helped found PrideAbility, an advocacy group for lesbian,
gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA)
people with IDD.
- Pauline
Bosma, a staff member with
Massachusetts Advocates Standing Strong and the founder and
coordinator of the Rainbow Support Groups, a network of support groups
for self-advocates who are members of both the IDD and LGBTQ+
communities. Pauline describes herself as a transgender woman who is
labeled with an intellectual disability.
The Q&A below captures highlights of what they shared with
us.
What led you to get involved in your advocacy work? What has
it meant to you to connect with other LGBTQ+ people with disabilities?
Bosma: I started the Rainbow
Support Groups in Massachusetts for LGBTQ+ people with IDD and
we have groups across the state with hundreds of members. Through Rainbow I
have met LGBTQ+ people with disabilities from all over the country and the
world. It feels good to help people find support.
Jusko: The PrideAbility movement has
allowed me to connect with all sorts of people with disabilities across New
York State. Before that, I hadn't met many people within the LGBTQIA+
community who were also people with disabilities. Back then, I didn't
understand other people with disabilities very well and was rather
close-minded. I was arrogant and rather full of myself. Being a part of
PrideAbility gave me the ability to bring my ego down a few notches and
connect with a community that I really hadn't before. It helped me accept
myself over the course of years as well as help me accept my
disability (Cerebral Palsy) on a deeper level. It also helped me appreciate
the strength and understanding of the IDD community. We are just like any
other community in that we are all different and unique but similar enough
to have a common understanding and appreciation for the skills, talents,
and struggles we all possess and face. In the face of adversity, the IDD
community rises together and supports each other the best way we can.
What drew you to research the experiences of LGBTQ+ people
with disabilities?
Hall: As my colleagues and I looked at data from
our National Survey on Health and Disability, we began to notice that
LGBTQ+ respondents had worse access to health care and poorer health
outcomes compared to straight, cisgender respondents with disabilities. We
wanted to better understand and explore this finding, so we conducted interviews
with a sub-sample of LGBTQ+ respondents. Honestly, we felt a strong need to
share the stories we heard and are doing so via existing and upcoming
articles. The second reason I was drawn to this research is my broader
interest in social justice. We are finding that this intersectional group
faces more challenges than LGBTQ+ people or people with disabilities alone,
and want to make sure that their needs and voices are heard.
What are some of the unique barriers that LGBTQ+ people with
disabilities face?
Jusko: I want to acknowledge that I
do not speak for all people with disabilities. Like all people, we all have
our unique challenges, skills, opinions, and talents.
There is a lack of compassion and knowledge within the
LGBTQIA+ community about people with disabilities. People think we can’t
have sex or don’t want to have sex or that people with disabilities are not
sexual at all. This is not the case at all. We are human and we have
emotional, mental, physical, and/or spiritual needs like any other person.
We want to make friends, have lovers, be in relationships, etc. Also,
depending on circumstances, a person with a disability may lack the staff,
funding, or ability to physically get in and out of LGBTQIA+ venues. For
example, many of the gay bars here are not very accessible physically
speaking. Stairs, slippery floors, and small and inaccessible bathrooms for
those in wheelchairs are some of the most common physical barriers.
Bosma: I think the biggest barriers
are not knowing about other LGBTQ+ people and not having
sexual education. Also, many don’t have support and their families or
care staff might not let them express their gender or their sexuality.
They also might not have any privacy to explore their sexuality.
Many LGBTQ+ people with IDD don’t know other people with IDD. That’s
why I started the Rainbow Support Groups, so LGBTQ+ people with IDD
can support each other and have a safe place to go where they feel
comfortable.
Hall: My team’s research focuses on the areas of
access to health care and employment for people with disabilities. Our
findings indicate that LGBTQ+ people with disabilities encounter
discriminatory attitudes and practices related to both their sexual/gender
minority (SGM) status and to their disabilities. As a result, LGBTQ+ people
with disabilities report less access to health care, with poorer mental and
physical health outcomes. They also report lower earnings than their
non-SGM peers with disabilities.
What are some misconceptions about people with disabilities
and sexual health? What are the consequences of these misconceptions?
Bosma: People think that people with
IDD don’t need to learn about sex or sexual health. Then people with IDD
don’t have information and they might get STDs, get someone pregnant, or
get in trouble with the law.
Hall: A survey we conducted in Kansas some time
ago indicated that, among youth with disabilities (ages 18-24), fully half
had never received information on birth control, sexually-transmitted
diseases, or pregnancy from their physicians, but 77% planned to marry and
70% planned to have children. One person with Autism Spectrum Disorder
(ASD) we interviewed more recently reported still seeing a pediatrician
despite being in their mid-20s, because adult providers were uncomfortable
seeing a person with ASD. Thus, this person had never received
age-appropriate sexual healthcare. Similarly, another interview
participant who was gay and had autism reported that his doctors would not
support him in obtaining the HPV vaccine or PrEP medication for HIV
prevention, putting his health at serious risk.
Jusko: All these misconceptions
result in people with disabilities feeling alienated from the LGBTQIA+
community and less confident when it comes to relationships and friends.
Also, it’s been my experience that able-bodied men feel that they shouldn’t
bother approaching me because there isn’t a point for them under the above
assumptions.
What advice or resources would you share with someone who is
uncomfortable discussing sexual health with a family member with IDD?
Bosma: If you don’t know much about
sexual health, you can ask other people for help. If you don’t have an
answer to a question, there is always someone who can help you.
Jusko: The best way to stop being
uncomfortable is to address the uncomfortable topic and understand not only
why the person with the disability wants to know more about sexual health,
but to also help that family member or friend understand why they are
uncomfortable about sexual health.
(Editor’s note: The Oregon UCEDD’s sexual health resource hub
includes a directory
of resource guides to help parents, educators, and direct
service professionals support the sexual health of young people with
intellectual and developmental disabilities.)
How can families, educators, support professionals, and
medical providers better support LGBTQ+ people with IDD?
Bosma: To support LGBTQ+ people with
IDD, you should listen to them and not be judgmental. You should let them
explore their gender and sexuality, with your guidance, so they can figure
out who they are.
Jusko: Listen. Learn. Be open-minded.
Don’t be afraid to face your uncomfortable feelings in regard to the
LGBTQIA+ community and/or people with disabilities. Let your lack of
knowledge and understanding motivate you to find answers from reliable
sources. More and more people with disabilities who are part of the
LGBTQIA+ community have come out of the woodwork. Please talk to them but
understand that one voice does not speak for all.
Hall: In our research, LGBTQ+ people with
disabilities report problems related both to their sexual or gender
minority status and to their disabilities in accessing medical care. One
example is that many medical providers seem to view people with
disabilities as non-sexual, and thus do not address reproductive health
care in appointments. Additionally, people with autism spectrum disorder
told us that doctors have suggested that, as people with ASD, they cannot
possibly understand their sexuality or gender and therefore cannot really
be LGBTQ+. Therefore, family members and others can support LGBTQ+ people
with disabilities by validating their SGM status and medical providers can
learn that people with disabilities represent the same range of sexuality
and genders as all of their other patients.
June is LGBTQ+ pride month, what does pride mean to you?
Bosma: To me, pride means supporting
my LGBTQ+ colleagues in the community and remembering the LGBTQ+ people
from the past who helped make changes and have passed on.
Jusko: Pride is a celebration of the
progress achieved on LGBTQIA+ rights and of gratitude for all the support
that has allowed us to get where we are now. It is also a celebration of
love in all forms. Pride is a reminder humanity can be beautiful if we just
accept ourselves and others without judgement. Life can be complicated. Why
break each other down, judge, or hurt each other and/or ourselves?
Where do you think research on the experiences of LGBTQ+
people with disabilities is headed?
Hall: I would hope that research continues to
explore the additional barriers to full participation for this group and
also to document instances where services, supports, or policies have made
a positive difference. The pandemic has resulted in historic expansions of
telehealth and telework opportunities, which have often addressed
disparities in access to healthcare and employment for people with
disabilities. It seems important to conduct research to see if these
options are helpful to LGBTQ+ people with disabilities and, if so, to find
ways to continue their availability.
How do you hope that the experiences of growing up as an
LGBTQ+ person with IDD will be different 20 years from now?
Jusko: I hope that there won’t be a
focus on LGBTQIA+ issues or people with disabilities. We will all just be
accepted and understood as people, without regard to labels. If you're
proud of you're label, be proud without fear. I hope that our community
will be accessible to all and there will be less stigma and more love and
understanding between our two communities.
Bosma: I’m hoping there is a lot more
respect for people with intellectual disabilities, including people who are
LGBTQ+, so they are treated like they belong on this Earth.
Rohmteen Mokhtari is a public affairs officer in ACL’s Office
of External Affairs. He identifies as a gay man with low vision and
ADHD.
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