Contraceptive Pearl: Practices of Consent and Autonomy for Patients with Disabilities, Part 1
Written by Maddie Fowler, Spark Dariy, Amy Stone
Many disabled people have been systematically disempowered and taught to prioritize compliance over self-advocacy. People with disabilities experience sexual assault at over three times the rate of nondisabled people, rising to seven times the rate in people with intellectual and developmental disabilities (IDD).¹ Therefore, it is critical that gynecological appointments implement consent practices to actively support the autonomy of patients with disabilities. This article introduces key consent practices; next month’s article will focus on special considerations for those with physical disabilities, IDD, and disabilities that limit speech.
Before the exam, have a discussion about consent while the patient is fully clothed to reduce vulnerability and empower patients to express their needs. Some patients may need to schedule longer appointments for a complete conversation. During this conversation, provide an overview of what will happen, and ask if the patient has any specific concerns. It may be helpful to provide diagrams and 3D models to enhance understanding and/or allow patients to hold and examine the medical instruments. A patient may also prefer to point out areas of concern during the exam instead of a verbal description. Involve the patient as much as possible so they know that this is a process the clinician and patient create together rather than something done to the patient.
Provide options about how a gynecological exam or procedure can be done to allow patients comfort and control of their bodies. Provide options in the tools used, such as different materials and sizes of speculums. Offer comforting measures, such as holding a comfort item, fidget toy, or cell phone; changing the room lighting; or playing music. Allow patients to have a caregiver/care partner, friend, or clinic-assigned chaperone present.
Talk together to establish a process of continuous consent during the exam. Ask how the patient typically responds to discomfort; some people may move or vocalize, while others may tense up or become silent. Some patients prefer to hear about and agree to each step of the exam, while other patients prefer to hear less verbal description and rely instead on signaling to pause the exam when needed.
Some patients may move their bodies during the exam. Some people may experience spasticity that would cause pain if the speculum remained inserted. Talk before the exam about voluntary or involuntary movements and make a plan about how to respond, and what might indicate the exam or procedure should be paused. For example, a patient may decide to have the clinician continuously check in, and if the patient stops responding, the clinician should pause the exam until consent can be reaffirmed.
Clinicians should also monitor patients for signs of pain/discomfort, as some may be uncomfortable signaling or confirming that they need to pause. Provide multiple options to support patients with pain or anxiety issues, like hot or cold packs, premedication, local anesthetic, or sedation, especially in cases of significant trauma or pain issues. In cases of significant anxiety, a patient might wear a pulse-oximeter to monitor heart rate and determine when to take a break. Clinicians and patients should establish before the visit if heart rate or oxygen levels warrant a break to allow these vitals to restabilize, especially for patients who have a strong vasovagal response to anxiety or pain. Blood pressure increases, sweating, and/or headache may also occur, such as in conditions like autonomic dysreflexia, and may be monitored in these cases.
At the end of every exam, ask the patient how things went and what could be improved.
RHAP resources:
Your Birth Control Choices Fact Sheet
Your Birth Control Choices Poster
Contraceptive Pearl: Alternative Positions for Pelvic Exams
Partner Resources
Inclusive Sexual Health Services: Practical Guidelines for Providers & Clinics
Healthy Understanding of Our Bodies
The Disability-inclusive Sexual Health Network social story visual aid
Sources
Pharma-free
The Reproductive Health Access Project does not accept funding from pharmaceutical companies. We do not promote specific brands of medication or contraception. The information in the Contraceptive Pearls is unbiased, based on science alone.
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