a photo in Palestine during the sunset with text overlapping - "This international day of persons with disabilities, please remember that wars are mass disabling events." // Under the text is a digital sketch drawing by Kalyn Heffernan of Ibrahim Abu Thurayeh on the front lines in Gaza. Holding high a peace sign and the Palestinian flag in a wheelchair as a double amputee with no legs. Shot and killed by Israeli soldiers at 29 yrs old after being shot losing both his legs for protesting.

Disability in Gaza

Posted on by Grayson Schultz

I published this on Dec 3, 2023, on my Substack newsletter.

Today is the International Day of Persons with Disabilities, a day set aside in 1992 by the United Nations to discuss the rights of disabled people. In 2006, they put out the Convention on the Rights of Persons with Disabilities — a document that requires countries to take care of and pay attention to how their disabled citizens are living in addition to other requirements.

Israel signed onto the Convention in 2007, ratifying it in 2012. Their status as occupiers in Palestine means this applies to Palestinians, too, and that Israel is responsible for ensuring the 50,000 (and growing) disabled Palestinians have all of their rights and are safe.

And yet, if that was the case, this specific newsletter wouldn’t exist.

So, let’s talk about disability in Gaza.

“The Israeli military’s major ground offensive in Gaza adds immeasurably to the serious difficulties for people with disabilities to flee, find shelter, and obtain water, food, medicine, and assistive devices they desperately need,” said Emina Ćerimović, the senior disability rights researcher at Human Rights Watch. “The United States and other Israeli allies should press Israel to take all necessary steps to protect people with disabilities and lift the blockade.”

People in Gaza lack wheelchairs, prosthetics, crutches, hearing aids, and other assistive devices — a result of the 16-year long blockade.

Even if you do have a wheelchair, how do you navigate areas of mass bombing? Once you find a safer space to exist in, how long will it be until you’re forced to move again?

How do you try to move in a world that is now even more inaccessible to you than before?

All of this, among other reasons, is why a report earlier this year found that Israel was violating the rights of disabled Palestinians.

Deaf folks cannot hear the airstrikes.

Blind folks cannot navigate the rubble or new areas easily on their own.

The hospitals, schools, and other spaces that people may previously have sheltered in are inaccessible, overfull, or being destroyed despite the destruction being a violation of international humanitarian law.

Without access to electricity and the internet, some assistive devices like CPAP machines or augmented communication devices aren’t even able to function.

Others cannot communicate with the people who can help them the most, with their cell phones out of battery or unable to connect to the internet.

And none of this even begins to approach the issue of a lack of access to regular medical care for cancer, kidney disease, and more — or how the lack of UNWRA staff and supplies means many people, like Al Madhoun, are going without medication that they need to live.

Madhoun, a 39-year-old woman, cannot access medication for high blood pressure or diabetes: “Usually, I get the medication from UNRWA, but there is no organization on the ground right now giving out medication.”

Do you know how easy it is to die without access to diabetes medication? Absurdly so.

Madhoun also shared that she doesn’t “have people here whom I know, I cannot access water or food and I don’t feel safe.”

Not to mention how disease is running through the area rampantly. An upper respiratory infection that sound a lot like COVID-19 is among them. Bisan Owda, a 24-year old filmmaker, is just one person who is incredibly ill and struggling with their health. She is also one of the few people who has done the most to share about what’s going on every day in Gaza who is still alive.

Some of the URI-like symptoms could also be from the toxic materials used in building construction that have been vaporized and breathed in by folks of all ages. We know these materials cause a ton of health issues, including lung disease and cancer, because of September 11th, 2001.

The lack of access to food, water, proper toilets, disease-free zones, and more is all leading to a high death toll for Palestinians — and especially disabled Palestinians.

One statistic that’s been heavily shared is that half of Gazans are children. This is true, but have you stopped to consider why? Jesse does, in this piece on what disability justice means in Gaza.

And, as Alice Wong highlights in her recent piece “Why Palestinian Liberation Is Disability Justice”

I’m no expert but I know what it means to be dehumanized, rendered disposable, and oppressed. I know that all people deserve freedom. I know that genocide is a mass disabling event and a form of eugenics.

All of this is not new, but may be new to some of you. And that’s okay.

But, as a sign of how not-new it is, consider that for some this is their fifth war — and they’re not even that old.

This siege hasn’t been just 55+ days. It’s been decades of increasingly horrific actions.

And it has to stop.

So, this International Day of People with Disabilities, please consider the ways disabled people are being actively harmed around you — and what you can do to stop it.

How You Can Take Action

Resources + Further Learning

If there are additional topics that you’d like to learn specifically about RE Palestine and/or disability, please reach out! I’m happy to recommend links, books, or whatever feels most accessible to help.

Three friends of varying genders taking a selfie in a park with a polaroid camera - "How people prefer to be asked about their sexual orientation and gender identity on health surveys"

How do people prefer to be asked about their sexuality & gender on health surveys?

Posted on by Grayson Schultz

The following is a press release issued by The Pride Study on Monday, November 13, 2023:

Official Title

Asking sexual orientation and gender identity on health surveys: Findings from cognitive interviews in the United States across sexual orientations and genders

Community Title

How people prefer to be asked about their sexual orientation and gender identity on health surveys

What Did We Do?

We interviewed 44 diverse participants about how they prefer to be asked about sexual orientation and gender identity on health surveys. Participants included 14 cisgender heterosexual people and 30 LGBTQIA+ people and ranged in age from 18-82. Also, 64% of participants indicated that their race or ethnicity was either: Asian; Black, African American, or African; Hispanic, Latino, or Spanish; or had two or more races/ethnicities. Interviews were 60 to 90 minutes and included giving feedback on various versions of survey questions.

Note: Participants for this study were not recruited from The PRIDE Study. However, this study was the first part of a series that later included participants from The PRIDE Study and was inspired by The PRIDE Study participants.

What Was New, Innovative, or Notable? 

This was one of the first studies that explored how both cisgender heterosexual people and LGBTQIA+ people want to be asked about sexual orientation and gender identity on health surveys and how these groups compare. We had a diverse group of participants by age, sexual orientation and gender identity, race and ethnicity, and from rural, urban, and suburban settings across the U.S.

What Did We Learn?

We identified four major themes that are important to consider when asking about sexual orientation and gender identity: 1) purpose for asking, 2) context of information collection, 3) distrust of the government, and 4) fear. While many participants were open to sharing sexual orientation and gender identity information on a federal health survey, all participants questioned the survey’s purpose and expressed distrust of the government. However, only LGBTQIA+ participants said they might change their answers depending on the survey context. Many said they would be more willing to share this information in a personal medical context or for a local community survey rather than a federal health survey. Further, only LGBTQIA+ participants expressed fear for their safety when sharing this information.

What Does This Mean for Our Communities? 

When taking a federal health survey, some LGBTQIA+ people may have different reasons for being fearful compared to cisgender heterosexual people. Additionally, there may be common concerns across LGBTQIA+ and cisgender heterosexual people about sharing sexual orientation and gender identity information on health surveys. Therefore, taking a ‘one-size-fits-all’ approach to asking about sexual orientation and gender identity on health surveys may not be ideal.

What’s Next? 

Additional research is needed to further explore how LGBTQIA+ people feel about sharing sexual orientation and gender identity information on surveys. Research should look at the reasons why people may change their answers in different survey contexts or not answer these questions at all.

Action Steps

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation

Pho A.T., Bates N., Snow A., Zhang A., Logan R., Dastur Z., Lubensky M.E., Flentje A., Lunn M.R. & Obedin-Maliver J. Asking sexual orientation and gender identity on health surveys: Findings from cognitive interviews in the United States across sexual orientations and genders. SSM – Qualitative Research in Health. 2023 September 29; doi: https://doi.org/10.1016/j.ssmqr.2023.100344.

Photo used courtesy of Gender Spectrum

Type 1

Type 1

Posted on by Grayson Schultz

A few years ago, I came across Noah Averbach-Katz in Star Trek: Discovery. He, along with his wife Mary Wiseman and their friend Anthony Rapp, play some of my favorite characters — and are some of my favorite actors.

Yesterday, they released a short film they’ve been working on for a while. This is Anthony’s directorial debut and a story written by Noah about trying to seek out Type 1 Diabetes supplies at the end of the world.

Noah, who has T1D, does so much to raise awareness of the scary situations that many of us who rely on daily medication face — the shortages, the emotions, and rationing to stay alive.

I’m especially happy to see that T1International supplied support. Backing this project is one of the coolest things I’ve ever had the opportunity to do, too, and I’m so grateful for how it turned out.

You can read the Playbill article about the short film — and watch it below!

Posted in T1D
Testosterone, Sexual Health, and Pain During Sex among Transgender Men, Nonbinary, and Gender Diverse People | photo of a nonbinary person injection testosterone into their thigh (from gender spectrum)

Testosterone, Sexual Health, and Pain During Sex among Transgender Men, Nonbinary, and Gender Diverse People

Posted on by Grayson Schultz

The following is research that came out earlier this month (September, 2023) from the Pride Study:

What Did We Do?

We looked at sexual health experiences data from The PRIDE Study’s Annual Questionnaires from 2019-2021 provided by transgender men, nonbinary, and gender diverse people who were assigned female sex at birth (AFAB). We also looked at how these sexual health experiences were different or similar among people who were currently using testosterone and those who were not.

What Was New, Innovative, or Notable? 

Our study is one of the largest to look at the relationship between testosterone use, sexual health, and experiences of genital pain during sex among transgender men, nonbinary, and gender expansive people AFAB.

What Did We Learn? 

There were 1,219 participants in this study. 49% of participants were using testosterone and 42% had never used testosterone. Many (65%) reported having any genital pain during sex in the past 30 days (from when they completed the survey). Compared to people who never used testosterone, individuals who were using testosterone had a higher interest in sexual activity and a higher ability to orgasm. People who were using testosterone were also more likely to report genital pain during sex. We did not see a relationship between current testosterone use and satisfaction with sex life, ability for genitals to produce their own lubrication, or orgasm pleasure.

What Does This Mean for Our Communities? 

Testosterone usage for the purpose of affirming one’s gender can be associated with both positive and negative sexual health experiences. Testosterone likely impacts sexual health experiences in complex ways. For example, testosterone may play a role in genital pain during sex for some individuals. At the same time, testosterone may play a role in increased gender affirmation and improved mental health that may be related to more positive sexual experiences.

It is important that a high percentage of participants reported experiencing genital pain during sex because it can have an impact on their well-being and quality of life. However, there are not any treatments for genital pain during sex that have been evaluated specifically for transgender men or nonbinary and gender diverse people AFAB.

What’s Next? 

Our long-term goal is to identify effective and acceptable ways to treat or prevent genital pain during sex among transgender, nonbinary, and gender diverse people and to make treatments accessible. Future studies will focus on: learning more about people’s preferences for potential treatments, the ways that people using testosterone address genital pain symptoms, and what they find to be most effective. Lastly, we plan to look at how genital pain during sex impacts the overall quality of life, well-being, and relationships for transgender men, nonbinary, and gender diverse people AFAB.

Action Steps: 

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Tordoff DM, Lunn MR, Chen B, Flentje A, Dastur Z, Lubensky ME, Capriotti M, Obedin-Maliver J. Testosterone Use and Sexual Function among Transgender Men and Gender Diverse People Assigned Female at Birth. American Journal of Obstetrics & Gynecology. 2023 September 9; doi: https://doi.org/10.1016/j.ajog.2023.08.035 (article will be live in the near future)

View the full PDF at: https://escholarship.org/uc/item/6bz2x0j6

Survey: Experiences with Religion for LGBTQ+ Individuals

Posted on by Grayson Schultz

UCONN UNIVERSITY OF CONNECTICUT PARTICIPANTS NEEDED I'm recruiting LGBTQ+ young adults for my dissertation on religious experiences. If you WERE RAISED in a religion that does not support LGBTQ+ people, please complete the screener to see if you qualify. Qualified respondents: • Will be invited to a virtual 45 to 60 minute interview • Receive a $40 Amazon gift card Click the link below or scan the QR code to learn more and complete the screener: https://bit.ly/48qAWK4 IRB: Contact: veronica.hanna-walker@uconn.edu

What is the purpose of this study?
The purpose of the study is to better understand (1) LGBTQ+ young adults’ decisions about continuing their association with the religion from their childhood; (2) these adults’ thoughts on what would have helped them in deciding whether to continuing associating with this religion; (3) how their family influenced and/or helped with their decisions about their childhood religion.

What will you have to do if you agree to be in the study?
If you agree to participate, you will be asked to complete an online questionnaire. The questionnaire consists of questions about your age, gender identity, sexual orientation, race/ethnicity, religion, as well as your email address and phone number so we may contact you to invite you to participate in the study if you qualify. This survey will take 5 to 10 minutes.

If you are eligible to participate in the study, you will be invited to be interviewed within 7 to 10 days of taking this survey.

If you’d like to participate, click here.

Disabled & Deaf Trans People’s Survey (DTPS)

Disabled & Deaf Trans People’s Survey (DTPS)

Posted on by Grayson Schultz

The following is from the Transgender Law Center’s Disability Justice Project:

The Disability Project with floral decorations

Ableism is woven into our everyday systems yet the knowledge of disabled and Deaf trans people has often been overlooked in research, leadership development, and philanthropy. Collecting stories and data will create opportunities for our leadership and momentum to tell our collective story and fight for our rights and needs.

The DTPS is a survey created by and for disabled and Deaf trans people. This survey gives disabled and Deaf trans people a tool to advocate for ourselves, to organize, and to transform movement spaces.

Please participate in the survey by visiting the survey website!

Society’s attitudes and negative healthcare experiences among transgender, nonbinary, and gender diverse people

Society’s attitudes and negative healthcare experiences among transgender, nonbinary, and gender diverse people

Posted on by Grayson Schultz

The following is research from The Pride Study published August 24, 2023.

What Did We Do?

We looked at reports that rated a state or area on their environment for LGBTQIA+ people, which we used to represent their local society’s attitudes. We then looked to see if those attitudes were related to any negative healthcare experiences of transgender, nonbinary, and gender diverse people that were reported in The PRIDE Study 2019 Annual Questionnaire.

What Was New, Innovative, or Notable? 

This study was among the first to test how existing research measures may reflect society’s attitudes about transgender, nonbinary, and gender diverse people and how they are related to experiences in healthcare.

What Did We Learn? 

We did not find a relationship between these existing research measures of society’s attitudes about transgender, nonbinary, and gender expansive people and negative healthcare experiences. However, we found that 18% of transgender, nonbinary, and gender diverse people reported a negative experience in healthcare during the past year and 12.5% had a negative experience in mental healthcare. This is important because mental healthcare experiences are not usually looked at separately from the rest of healthcare experiences.

What Does This Mean for Our Communities? 

Transgender, nonbinary, and gender diverse people had negative experiences in both mental healthcare settings and in general healthcare settings. However, society’s attitudes, as measured in our study, were not related to these experiences.

What’s Next? 

Society’s attitudes about transgender, nonbinary, and gender expansive people are not well measured in research. Understanding how the community experiences those attitudes is important. Until this improves, other factors that may affect experiences in healthcare should be looked at to improve the experiences of transgender, nonbinary, and gender diverse people.

Action Steps

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation

Clark KD, Lunn MR, Bosse JD, Sevelius JM, Dawson-Rose C, Weiss SJ, Lubensky ME, Obedin-Maliver J, & Flentje A. Societal stigma and mistreatment in healthcare among gender minority people: a cross-sectional study. Int J Equity Health. 2023 Aug, 24; 22(1):162. doi: https://doi.org/10.1186/s12939-023-01975-7

Silc Touch Ergonomic Handle

Posted on by Grayson Schultz

The following is a press release for the Silc Touch ergonomic handle:

The Silc Touch ergonomic handle is a revolution for all. Designed with accessibility in mind, the Silc Touch is the first full size toy handle on the market. It is truly a game-changer; offering better grip, better control, better angles – better pleasure. It’s simply a better way to hold a toy. Whether you’re looking for easier reach, less hand strain, more realistic thrusting, more pressure, or even a better view, the Silc Touch’s innovative design and classic craftsmanship will open new doors for you.

Continue reading “Silc Touch Ergonomic Handle” →

Access to Healthcare Issues for LGBTQIA+ People with Disabilities

Access to Healthcare Issues for LGBTQIA+ People with Disabilities

Posted on by Grayson Schultz

The following is research from The Pride Study published July 21, 2023.

What Did We Do?

There is limited knowledge about the barriers that LGBTQIA+ people with disabilities experience while accessing healthcare. Among participants in The PRIDE Study who reported that they live with a disability, we looked at responses from The PRIDE Study’s 2019 Annual Questionnaire regarding access to healthcare (such as having a primary care provider, having health insurance, etc.), delaying healthcare, and insurance coverage.

What Was New, Innovative, or Notable?

This is one of the first studies about the barriers to healthcare experienced by the LGBTQIA+ disability community.

What Did We Learn? 

In our study, we found that about 31% of LGBTQIA+ people lived with a disability. This was higher than national estimates of about 25%. LGBTQIA+ people with disabilities were more likely to have a primary care provider compared to their non-disabled peers. However, LGBTQIA+ people with disabilities experienced more barriers to healthcare. Specifically, LGBTQIA+ people with disabilities were more likely to delay seeking care, to not have health insurance, and to be unable to obtain care. When we looked at these barriers by different disability groups (physical, mental, intellectual, etc.), they were relatively similar. This tells us that many LGBTQIA+ people with disabilities may experience some sort of healthcare barrier.

We found that LGBTQIA+ people with disabilities delayed seeking care because of mistreatment or disrespect they experienced from providers. They were also denied care or given lower quality medical or mental healthcare compared to those without disabilities.

What Does This Mean for Our Communities? 

The findings of this study suggest that barriers to healthcare are happening more often for LGBTQIA+ people with disabilities compared to their non-disabled peers. This means that increasing culturally sensitive training for healthcare providers is necessary to improve the quality of care for LGBTQIA+ people with disabilities. The results showed that addressing appointment availability, the cost of care, insurance coverage, and transportation issues are important items for those who make healthcare policy to focus on. This may improve care for LGBTQIA+ people with disabilities.

What’s Next?

The results of this study can help identify improve public health and healthcare systems by improving access and the quality of care for people in the LGBTQIA+ community. Future work should explore the different experiences of separate groups of people in the LGBTQIA+ disability community. It would also be important to analyze the relationship between health insurance and experiencing barriers to care.

Action Steps

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation

Lamba S, Obedin-Maliver J, Mayo J, Flentje A, Lubensky ME, Dastur Z, Lunn MR. Self-Reported Barriers to Care among Sexual and Gender Minority People with Disabilities: Findings from The PRIDE Study. AJPH. 2023 July, 20: e1-e10. https://ajph.aphapublications.org/doi/epdf/10.2105/AJPH.2023.307333

 

PS: Want to contribute to research specifically for the disability community around sex? I’m collecting data! This survey is open through the end of July 2023.

The Trans Community & Negative Experiences in Healthcare

The Trans Community & Negative Experiences in Healthcare

Posted on by Grayson Schultz

The following is research from The Pride Study published at the end of May 2023:

What Did We Do?

We surveyed people who are transgender, nonbinary, or gender-expansive (TGE) and assigned female at birth to learn about their experiences with healthcare providers (such as doctors, nurses, and other people who work in healthcare settings).

Participants reported on interactions they had with a healthcare provider in the last year from a list of 16 different types of experiences (such as negative effects from a provider’s opinions about their gender identity or sexuality and a provider asking inappropriate questions about their gender identity). We looked at how different characteristics (such as age, race, or education level) might relate to reporting negative experiences. We also looked at whether receiving gender-affirming care (such as hormones or gender-affirming surgery) and being out as TGE to healthcare providers might relate to having negative experiences.

What Was New, Innovative, or Notable?

This is one of the first studies with a large number of participants to look at the relationship between receiving gender-affirming care and negative interactions with healthcare providers.

What Did We Learn?

Most of the participants (70%) reported at least one negative experience with a healthcare provider in the past year. The most common experiences were being negatively affected by a provider’s opinions about LGBTQIA+ identities and having to educate a healthcare provider about TGE identities to receive proper medical care.

We compared the experiences of TGE people who received gender-affirming care with TGE people who had not received gender-affirming care. The people who received gender-affirming care were more likely to report negative experiences with healthcare providers. They also reported a higher number of negative experiences for 15 out of the 16 experiences included on the survey. Among people who did not receive gender-affirming care, those who were out about their TGE identity to their healthcare provider were more likely to report negative experiences.

What Does This Mean for Our Communities?

Our findings support increasing and improving training about TGE identities among healthcare providers to help reduce bias. Experiences with healthcare providers may be improved by changes to the medical system, such as more inclusive data collection options in medical records and better insurance coverage for gender-affirming care.

Our findings do not mean that coming out as TGE to your healthcare provider or receiving gender-affirming care means you are in any way responsible for any negative experiences you may have.

What’s Next?

We hope to use these findings to raise awareness about the quality of healthcare for TGE people. We also want to use this research to encourage healthcare providers to improve their understanding of TGE identities and gender-affirming care. Future research can explore how these findings might change over time. Additional research can focus on participants with a diverse range of racial/ethnic and socioeconomic backgrounds, as the majority of the people in this study had health insurance and high levels of education and identified as white.

Action Steps

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation

Inman EM, Obedin-Maliver J, Ragosta S, Hastings J, Berry J, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Stoeffler A, Dastur Z, Moseson H. Reports of negative interactions with healthcare providers among transgender, nonbinary, and gender-expansive people assigned female at birth in the United States: results from an online, cross-sectional survey. Int J Environ Res Public Health. 2023 May, 31; 20 6007. doi: https://doi.org/10.3390/ijerph20116007

 

PS: Want to contribute to research specifically for the disability community around sex? I’m collecting data! This survey is open through the end of July 2023.

Photo used courtesy of Gender Spectrum