The Disability Pride Philadelphia workshop entitled “Let’s talk about disabled sex and disability. Yes we have it” was held on 10/26/19 and was a great success! I wanted to share ten things I personally took away from the workshop. Thank you to Vicki Landers and Isabel Kauffman, for putting this workshop together. I was honored to participate. Keep an eye out for the next one!
10. “FRIES” acronym for consent; Freely given, Reversible, Informed, Enthusiatic, Specific. 9. There are so many euphemisms for the words “penis”, “vagina” and “sex”. There are none for the word “elbow” because we are comfortable just saying elbow. Let’s learn to to get comfortable saying “penis”, “vagina” and “sex” too. 8. Tips on how to communicate with your partner. You can schedule planned arguments/heavy discussions with your partner for a convenient time for both of you. 7. Circles of sexuality. Sexual health is the one we talk about most, but the others are just as important. Other circles are Sensuality, Intimacy, Sexual Identity, and Sexualization. 6. The City of Philadelphia only had one mural showing a person with a disability and it has since been taken down. We watched an amazing film by Dykumentary that featured the mural while discussing gender identity and accessibility. 5. WOAR is changing it’s name to…Philadelphia Center Against Sexual Violence. 4. Planned parenthood has a range of services including, but not limited to; cancer screening, treatment for urinary tract infections, and gender affirming care.3. How to put on an internal condom (used to be referred to as a female condom). 2. The function and accessibility features of toys from Passional. 1. That other people with disabilities besides me are interested in kink. We are planning next workshop! Yay!!
Disability Pride Philadelphia, Inc. is committed to promoting visibility and mainstreaming awareness of the positive pride felt by disabled people and their communities.
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I am excited to share that I recently joined Orchids Research along with these sex educators whose work I admire.
Orchids research has distributed this survey which will help us to develop a free guide for people with disabilities to communicate better with their health care providers about sex. If you have not taken the survey yet, please consider taking it before it closes. Thank you!
Last month I had the pleasure of co-hosting the #BatteriesForSexChat on Twitter. You can join #BatteriesForSexChat on Twitter on the 1st and 15th of every month. In this session, we talked about communication with partners and communication with doctors, as well as medical treatments and surgeries. Below are the questions we discussed and my personal answers. Feel free to comment/ask questions. Make sure to follow #BatteriesforSexChat on Twitter!
1. What is your personal definition of sex? (For example. Would it include oral, fingering….)
For me it would be touching of any genitals with fingers, mouth, or your genitals. Intimacy can, of course, include much more.
2. How has your disability or illness affected your ability to have sex?
I have had a prolapsed uterus for the past three years which has gotten progressively worse. I also have bladder and bowel problems due to Spina Bifida, so it can be hard have sex. I am sometimes afraid to get naked. My anxiety makes it even worse.
3. What other things can you so do increase intimacy with your partner(s) when you are unable to have sex?
Cuddling, fingering, oral sex. I love even just how he walks up behind me as I am doing the dishes and plays with my hair, or snacks my butt. BDSM play. I can’t do any heavy impact play anymore but I love flogging and fire play.
4. How comfortable are you talking with your partner(s) about your disability or illness? What symptoms in particular are you uncomfortable talking about which affect your sex life?
I used to be really uncomfortable talking about my bladder and bowel problems with partners. Over the years, I have learned to understand and eventually accept this part of my disability and that acceptance has made it easier to talk about.
5. When is the best time to talk to your partner about your symptoms? Online before you meet? First date? Just before sex? Longer?
I tell people right away online that I have Spina Bifida. Some information (specifically bladder and bowel issues) I wait and share before we get intimate. More long term issues such as my declining health, I share more about as a relationship develops with a partner.
6. Are you comfortable talking with your doctors about sex?
I haven’t always been open with doctors (about being Bi, poly, kinky), but I decided I needed to be. It was important for me to get regular STI testing when I was poly. I also tell doctors about BDSM play to make sure I don’t I cause any serious injuries.
7. If a doctor doesn’t answer your questions, what other resources do you have to answer your questions related to your disability and sex?
I go to a different doctor. I talk to my Spina Bifida team. I talk to others adults with disabilities. Facebook groups for adults with disabilities (including your specific disability or illness) are great resources. There is my group SEXUAL HEALTH FOR WOMEN WITH DISABILITIES.
8. What treatments have you considered to improve your condition? Meds? Surgery?
I tried a pessary for the prolapsed uterus, but it didn’t work. I just had a hysterectomy in July and I am looking forward to having PIV sex again, and using toys! Yay! Bladder and Bowel issues are another story. Still trying to find something that works to avoid incontinence.
9. What concerns do you have about different types of treatment?
Medications for my bladder and bowel issues haven’t always worked long term. I also worry about side effects. I have tried probiotics, apple cider vinegar, laxatives, prescription meds. etc. I now get botox injections in my bladder and I am considering a surgery for my bowels.
10. If you have had surgery, how has that impacted your sex life?
I just had a hysterectomy. I am looking forward to having sex again. I may need another surgery for my bowels though. It is hard to be intimate when you are always sick in the stomach, feeling gassy, and unsexy. So I need to find a better solution for my bowels. I am looking into an M.A.C.E procedure.
Come out to this event and hear my personal story navigating sexuality and relationships with a disability. Plus, the Director, Izzy Criptastic Kauffman has many other speakers and interactive events lined up. I can’t wait!
I am Angela Car, a sexual health educator and advocate for people with disabilities. I am 44 years old and I was born with Spina Bifida. I have a M.A. degree in Criminal Justice and a B.A. degree in Psychology.
In graduate school, I became interested in working with people with disabilities who were either victims of crimes or alleged offenders. I worked as a graduate assistant doing research and I found there was a huge need to support people with disabilities involved in the criminal justice system.
Although there was a huge need, I could not find full time employment specifically in criminal justice and disability. So over the past 15 years I gained experience in a few different areas; from providing substance abuse prevention education for people with disabilities, advocating for access to housing and education, to counseling incarcerated women with mental health issues and addictions.
I became a Pure Romance consultant and received additional training in sex education. I realized that while I am not a great salesperson, I have a passion for educating people. So I no longer sell products. I am grateful for my experience as a Pure Romance consultant because it reminded me of what I am passionate about and gave me confidence to go after my goals.
My focus now is on education, advocacy and sharing my story to help other people. I created #DISIRability to start this important discussion of sexual health and sex positivity for people with disabilities. As people with disabilities, we have the same basic needs as everyone else. We desire intimacy and connection. We are desirable.
I have now been providing sexual health education and sharing my personal story for the past two years at local disability agencies and sexual health forums online and in person. I hope you will take the time to read my blogs. Most of them are about sexual health and disabilities. Others are on different topics I share about my life, such as family relationships and addictions. I look forward to connecting with you.