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Happy New Year from DSHN!
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Happy New Year from the Disability-inclusive Sexual Health Network! In honor of starting a brand new year, here is a recap of some of our proudest moments of 2022!
- We attended the Parent Youth Empowerment Summit hosted by PEATC in Williamsburg, Virginia and facilitated a youth workshop.
- We presented "How-To Tips to Make Your Sex Ed More Accessible to Youth with Disabilities, along with Their Parents, Caregivers, and Educators" at the Healthy Teen Network conference in Miami, Florida.
- We gathered all our partners together over Zoom for our annual summit in June.
- We highlighted the partnership between Special Olympics Virginia and Mad Hatter Wellness in a presentation at the Teen Pregnancy Prevention conference.
- Maddie Fowler and Spark Doyle (two members of our YAB) created and presented "Overlapping Identities: Autism and Queerness" to Fenway Health.
- We collaborated with the Heath Education Design Group to write and create two short films and hosted a virtual premiere!
- YAB created and recorded 11 unique presentations to serve as resources to organizations in the future.
- We hosted our first Parent Focus Group over Zoom and collected valuable data concerning youth with I/DD and relationships.
- We attended the Autism Hope summit in Charlottesville, Virginia where we talked with parents/caregivers of persons with autism and disability professionals.
- YAB won first place for their group submission of "What does a Disability-inclusive Healthy Relationship Look Like?" through TeenHealth360.
- We tabled at the Harrisonburg Pride Festival and participated in some Sex Ed trivia with the community.
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January is Cervical Health Awareness Month!
Please reach out to dshn@jmu.edu to share resources that would be helpful for folks in our network, or for more resources on any specific topic.
An important part of sexual health education is learning how to take care of all parts of our body, including the parts we can’t see! The cervix is one of those parts.
 The cervix is a tube that connects the uterus to the vaginal canal. It is fairly small and circular with a small opening in the center. The cervix is responsible for facilitating pregnancy, keeping bacteria out of the uterus, and producing cervical mucus to help clean the vagina. Depending on the health of the cervix, a doctor may recommend a pap smear every 3 - 5 years. During a pap smear, a doctor collects cells from the cervix and tests them for cervical cancer. Anyone with a cervix who is 21 years old or sexually active (despite age), should visit a gynecologist and discuss a screening plan.
While cervical cancer is the 4th most common cancer in persons with a cervix, it is one of the most preventable and treatable types of cancer. Anyone with a cervix can get cervical cancer - this includes persons born with a cervix and persons who altered their genital anatomy to align with their gender identity/expression. 99% of cervical cancer cases are linked to human papillomavirus (HPV) transmitted through sexual contact which is why it is important to see a gynecologist if you are sexually active and have a cervix. While cervical cancer is extremely rare for persons under the age of 30, most preventative measures must be taken far in advance. HPV vaccinations and regular screenings prevent most cases of cervical cancer.
Celebrate the New Year by learning more about cervical health! For more information, check out the resources below.
World Health Organization
Jo's cervical cancer trust
Center for Disease Control and Prevention (CDC)
American Cancer Society
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Resources throughout the newsletter are labeled as follows:
[t]=text [v]=video [a]=audio [l]=list [w]=website
January is Cervical Health Awareness Month and Self Love Month! Here are some resources to help you celebrate!
Cervical Health Resources:
[w] What to Expect at Your First OB/GYN Appointment The Cerebral Palsy Foundation provides this resource that walks disabled patients through an OB/GYN appointment.
[t] Table Manners: A Guide to the Pelvic Examination for Disabled Women and Health Care Providers Though outdated, this resources demonstrates the accommodations available for persons with disabilities at the OB/GYN.
[l] 11 Tips to Reduce Exam Anxiety at the Gynecologist
[w] Cervical Health 101: How to Take Care of Your Cervix
[t] Pelvic Exam Social Story This social story uses images and text to walk the patient through the process of receiving a cervical exam. This can be useful for patients who benefit from visual explanations.
[w] Interactive Tool: Understanding Cervical Cancer Prevention
[v] Cervical Screening: How It’s Done
[v] What is a Pap Smear? This animated video walks you through the process of visiting the gynecologist for the first time.
[l] OB/GYNs Share 11 Ways to Make a Pap Smear Easier on You and Your Vagina
Self Love Resources:
[l] 10 Tips for Loving Your Body (Disabled or Otherwise)
[a] The Inside View: A Journey to Self Love In this podcast episode, self-advocate Rachel Pretlow discusses their journey to love and embrace one's true self and the importance transforming the personal narrative of what it means to be autistic and thriving.
[a] The Heumann Perspective: Disability, Queerness, and Self Love with Annie Segarra In this episode, Judy and Annie talk about the impact of disability and sexuality on self love practices.
[v] Keah Brown’s #Disabledandcute Empowers People through Self Love
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Tip: Use YouTube's media player controls to make videos more accessible. Find out how at the links below:
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Youth Advisory Board Connection
YAB’s Insights on Best Practices for Gynecology Visits
While visiting the gynecologist is important for maintaining sexual health, it can sometimes be inaccessible for disabled people. These stories and suggestions come from the experiences of disabled people we know (ourselves on the YAB included) and are shared with explicit permission. We hope that these insights will be useful for individuals, parents/caretakers, and health professionals to make these appointments as patient-centered and comfortable as possible.
Anecdotes:
"I was 19 and decided to get an IUD. I have a physical disability, and my legs don't fit in the stirrups of the most commonly used examination tables at the OBGYN. The OBGYN team looked at me like, 'How is this going to work?' Since there was no more-accessible option, I said, 'well two people will have to hold my legs, one on each leg, to restrain my legs.' Because the OBGYN office did not have accessible examination chairs or equipment, this automatically meant I had to let two more people into this vulnerable situation and sacrifice my privacy. The examination and IUD placement really hurt my back and my legs. For some reason, the doctor didn’t tell me anything about what was going on in the procedure, or when they were actually inserting the speculum or placing the IUD. That added to my anxiety and muscle spasms, which further complicated the process. They said, 'Your hip is in the way, can you move it?' and since I have a subluxation, I couldn’t move it. They talked almost entirely to my mom instead of talking to me, but I was also in pain so it was hard to talk. It was incredibly uncomfortable and I was breathing heavily trying to control the pain. The overall experience of the visit left me feeling violated."
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"In college, my endometriosis worsened and I was bleeding extremely heavily. I was so scared to go to an OBGYN so I put it off until it was getting dangerous. I made my first appointment at Planned Parenthood, and I brought my friend with me to help me feel safe. There were protesters outside screaming that I was there to kill my baby. I nearly had a panic attack walking into the building.
The inside of the building was completely different from the outside. It had a nice waiting room that didn’t feel overly clinical. The staff were so sweet to me, and they let me bring my friend back for my exam. The clinician came in to talk to me first, with me still dressed and sitting on a chair instead of the exam table. I disclosed my autism, my history of sexual assault and trafficking, and that the only pelvic exam I’d had was in an ER, with a nurse using an adult speculum on my 14-year-old body and lecturing me for crying when it hurt. I was literally shaking when I finished speaking.
She was kind and reassuring, and asked how she should know if I needed to stop the exam. I explained that I go nonverbal when I’m in pain and won’t be able to verbalize for her to stop, and she suggested that we use my silence as a 'pause' signal. I asked her to touch firmly instead of lightly so I knew where her hands were.
During the exam, she told me what she was doing and asked for consent before each step. She showed me the pediatric speculum and let me hold it and look it over (she used a clean one for the exam). She talked to me about my hobbies as she inserted the speculum, and when I felt a sharp pain and stopped being able to respond, she immediately froze, and only continued when I verbally consented.
She made me feel safe, which was so important to me in a setting that was liable to trigger my trauma and to be painful. She listened to me about my symptoms and started me on a birth control that would work for my body, and would help with the symptoms I was experiencing. 7 years later, I’m no longer in college and live over an hour away, but I still go to see her for my appointments, because I know she sees me as a person, and she’ll respect me and my body. I see her maybe twice a year at most, and she remembers my specific needs without me needing to remind her of things."
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Best Practices for gynecology appointments:
- Before the patient arrives for their appointment, provide specific information about how the visit will go so the patient may prepare and know what to expect.
- Respect the patient's identity. Remember that people of all genders may need to visit the gynecologist, and not all people with a uterus are women.
- It is important that patients have the option to have a friend or advocate in the room if they wish.
- The friend can help advocate for the patient to ensure the procedure aligns with their needs and preferences, and provide emotional support.
- Health personnel should speak directly to the patient rather than to their friend, parent, or guardian.
- Let the patient decide if they will allow their companion in the room to speak on their behalf. Some patients may find this comforting, but only with their explicit permission.
- OBGYN offices must have accessible examination tables and equipment to be inclusive of all bodies.
- Health personnel should take guidance from the patient about the best way to make the exam accessible to them.
- Allow the patient to transfer from the wheelchair to the examination table in the way that feels best for them. This may mean allowing an additional support person into the room to assist.
- Before the procedure, walk the patient through the steps and make a plan for body positioning and movement for accessibility during the procedure.
- Discuss specific needs, such as whether or not a patient can swallow pills or has a latex allergy.
- During the visit, have a conversation to create a detailed plan and discuss needs before the patient takes off their clothes or gets on the exam table.
- Having these discussions while clothed and outside the exam table can help patients feel more in control of their bodies and the procedure.
- Come up with a safe word or signal (silence can be a signal) for the professional to know to stop the exam. Also discuss what will happen if the safe signal is used, such as pausing until the patient consents to continue or stopping the exam completely.
- Help the patient feel comfortable about the tools that will be used.
- Letting the patient handle spare tools if safe (i.e. handling a speculum, the swab for pap smears, etc.). This may help reassure patients with sensory issues or anxiety about medical procedures.
- Let the patient request the speculum they feel more comfortable with, such as pediatric vs. adult and metal vs. plastic, or having the provider warm it before insertion.
- For patients who have trouble describing the location of the issue, consider letting them put on gloves and physically show where the issue is occurring.
- Believe and pay attention to the patient's pain levels.
- Remember that pain levels may not match the assumed body language and facial expressions of the patient because every person expresses pain differently. For example, some Autistic people use facial expressions that differ from generally assumed expressions of people in pain.
- Use a pain scale that makes sense to the patient (the smiley face scale where the emoji doesn't start crying until the pain in a level 10 is often inaccessible). Often, accessible pain scales will describe the functional level of the pain (i.e. if the pain makes you unable to concentrate, speak, etc.)
- Provide accurate explanations of potential pain levels during the procedure.
- Provide information on all options available (such as local anesthetic for an IUD placement).
- Do not downplay pain that may be experienced. Everyone's pain levels are different.
- Allow a patient to stop a procedure, like an IUD placement, midway if they are in too much pain or want to stop. Do not try to continue a procedure after consent is withdrawn by insisting that it is 'almost done.'
- Normalize patients' reactions to the appointment.
- Trauma responses are not abnormal. Neither is having no response at all.
- Don't compare the patient to other patients. Just because the last 20 IUD placements were not uncomfortable, doesn't mean this IUD placement won't be either.
 
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