If you’ve been reading this blog, you know the purpose of its creation is to explore the importance and effect that disability has during pregnancy. You may have also noticed a long gap since my last post. Yes, I’ve been preparing for Eli, but full disclosure, I’ve struggled with the idea that maybe there is no point writing about disability and pregnancy at all. Maybe my fascination with these two subjects is simply that--my obsession.
Over the last several weeks I’ve been torn between my options for anesthetics during my C-section. I still haven’t made a decision as to whether I will choose regional or general anesthesia. There are positives and negatives to both, but generally regional is safer. Regional consists of either an epidural, a spinal block, or a combination of both. I would be awake during the procedure and get to meet Eli (assuming there are no complications) almost immediately after he is born. For general, the anesthesiologist would put me under during the operation, meaning I wouldn’t get to meet Eli until after I wake. On the surface it seems like an easy decision. Afterall, I’ve been waiting to meet Eli for 9 months already. So what’s my problem?
Nerves. In the physical and psychological sense. Here’s the tricky part, cerebral palsy affects everyone differently and most OBGYNs have limited or absolutely no experience working with expecting parents with CP. Based on mine and my doctor’s combined knowledge and experience we’re making our best educated guesses about how to proceed with birth. Doctors explore the unknown all the time. For patients (disabled or not) though, this may be new territory and it is a rightfully terrifying journey. I feel very fortunate to have the OBGYN that I do. Not only is she competent, she has a great sense of humor, and I feel genuinely respected and cared for by her. I am her first expecting patient with CP, but she is constantly adapting to my needs and educating me as we face this new frontier together. Her compassion sets her apart from other medical professionals I’ve met. For instance, annual exams are exhausting for me, a reality she noticed during our first prenatal visit. Her understanding of how my body can act counterintuitive during this common routine differed greatly from past experience:
Some years ago, I was seeing a new OBGYN for my annual when she commented while trying to inch the speculum deeper in my cervix, “if it’s this uncomfortable, how do you have sex?” I can’t even remember my response. Thinking back there are three main points that come to mind during this humiliating and infuriating encounter. 1. This medical professional lacked the empathy to understand how hard I was working to keep my muscles relaxed while also keeping my feet in the stirrups so she could do her job. 2. Fingers and penises are flesh, not metal. 3. I usually prefer a generous amount of intimacy before letting someone near my vagina, thank you very much. Breathing helps reduce the intensity of spasms in my body, but the majority of when and how much the spasms clench is beyond my control.
The spontaneity of my spasms as well as the nerve damage I have acquired because of how hard I’ve pushed my body in the past, in combination with my spasms is the very reason I am so nervous about regional anesthesia. What if I spasm when the anesthesiologist inserts the needle? What if I incur more nerve damage from the epidural or block because I accidentally moved? If so, how will my disability be affected by the new damage? More importantly, what if my spasms interfere with the epidural, allowing me to feel everything, and they have to knock me out anyway?
Even with my doctor’s expertise, I want to know more about the relationship between pregnancy and the disabled body. I want to make sense of my evolving experience as a pregnant disabled person. It is far more complicated than people realize. There are things that only, Tom, myself, and my doctors know… the profound effect that certain compromises to ensure Eli’s safety and my own have had on me. Every parent compromises, yes, but I learned for me, because of my CP, there is a unique price that I have to pay. I am still coming to terms with the reality of these compromises and how they affect my future and my worth as a disabled individual in the United States of America.
Being a former academic, I started researching cerebral palsy and pregnancy. Unfortunately, I found very little information. In addition to a lack of medical information there was a glaring absence of personal accounts from individuals with CP or anyone with a disability who had performed the awesome task of bringing a child into the world. At first, the only thing I found was a fact sheet that stated epidurals are not recommended for expecting parents with CP who have spasms.1 Well, shoot…
The recommendation wasn’t just alarming, it was cryptic. Were epidurals not recommended only during vaginal births or did it include cesarean sections as well? What type of spasms was the document referring to, visible or hidden? For which type of palsy was this recommendation based on? For inquiring minds, I have diplegic cerebral palsy.
I spoke to a close confidant who suggested that maybe the reason why nothing exists on the topic is because disabled parents have normal births. In so many ways this is a novel idea. I want so much for it to be true. It would be so beautiful if disabled parents having babies was the norm. Individuals with disabilities are people too, so of course we’d be birthing just like everyone else, right? After our conversation I began to wonder if I was going down a dead end. Maybe I’m being too sensitive. It wouldn’t be the first time. I have struggled with anxiety through the whole pregnancy. Perhaps my brain is working overtime. Yet the feeling that I am not alone in my confusion, frustration, and isolation as an expecting disabled parent continued to pull at me.
The universe felt my pain and insecurity, because the next day I read an article titled “New Tools to Help Women with Physical Disabilities Make Decisions About Pregnancy”. The article highlights the lack of resources surrounding pregnancy for individuals with physical disabilities, primarily due to misguided beliefs about disability that persist in our culture. Associate Professor of physical medicine and rehabilitation, Claire Kalpakjian, articulates, “... Even though there are thousands of women with physical disabilities, such as spinal cord injury, cerebral palsy or multiple sclerosis, who become pregnant each year, they still deal with stigma.”2 To help address this gap in information and support for potential disabled parents, the University of Michigan is utilizing two grants to create decision-making tools to help individuals with physical disabilities make informed decisions based on their condition(s) and needs about pregnancy and childbirth. The grants could go a long way in helping to eradicate the uncertainty and misinformation about sexual health, reproduction, parenthood, and disability. I also foresee this as an opportunity to create a more symbiotic relationship centered on trust and understanding between patients with disabilities and their medical professionals. In addition to a lack of discussion about parenthood for patients with disabilities medical professionals are finding that many disabled people aren’t being given basic routine health screenings on a regular basis. One of the reasons for this lack in services is the ongoing myth that people with disabilities are not/can’t be sexually active.3 The good news is the subject of pregnancy in connection with disability is starting to gain traction in the medical field. Researchers and doctors are realizing the important part disability plays in reproduction and sexual health and that it needs to be more thoroughly investigated. Recently a friend shared a link to University of Michigan Health Research where they are seeking to collect information from women with physical disabilities about conception and pregnancy.4 Reading about these projects has produced a lot of excitement while validating my own quandaries regarding the lack of knowledge about pregnancy and disability in the medical field.
It still wasn’t enough, though. I wanted more.
So I continued to scour the internet and finally found two personal accounts from mothers with CP who shared their birthing process. One had a C-section and two epidurals that didn’t take because of nerve damage created by her spasms (hence my earlier question about regional anesthesia).5 The other mother had two vaginal births with no medication despite being told she would have to undergo a cesarean section.6 I was enraptured by their tales. I inquired with a friend who has CP about her experience with birth. It differed from the two individuals’ stories above. When it comes to pregnancy and birth there is no crystal ball. Everyone is unique, therefore, how they experience pregnancy and birth will be entirely different. The truth is there is absolutely no way of knowing how my body is or isn’t going to respond to medication or to surgery. It’s the luck of the draw. Sometimes I wonder if I would be able to have a vaginal birth… notice my word choice here. Vaginal birth. During pregnancy vaginal birth is often referred to as natural birth. This is a defeating perspective that often makes soon-to-be parents feel less than, dehumanizing them during one of the most joyous and complicated moments of their lives. Every birth is natural. In her book, Like a Mother: A Feminist Journey through the Science and Culture of Pregnancy, author Angela Garbes says it best, “No matter how you give birth, it requires all sorts of stretching, pushing, squeezing, stitching, rearranging, resetting, and healing.”7 Despite my wonderment about vaginal birth I trust my doctor and believe this is the safest route for me and my baby. Knowing it is the right decision doesn’t automatically make it less scary. While everyone assures me C-sections are a common and safe method of delivery, at the end of the day, it’s still major surgery, and I am the one who has to recover.
Another great resource that captures parenthood from the perspective of parents with disabilities is the documentary, We Won’t Drop the Baby, which follows couple with CP, Adele and Laurence, as they welcome their second child into the world. The documentary was created by BBC One and IWC of the Zodiak Media Group and is currently featured on YouTube. Plus, it’s narrated by David Tennant, so it’s easy on the ears.8
My experiences as a pregnant disabled person matter, as do the experiences of every other person with a disability who is thinking about becoming a parent, or asking the question, “what the heck are pregnancy, birth, and parenthood going to look like for me?” Just because our stories aren’t recorded, doesn’t mean they don’t exist. It is imperative that more stories and research about disabled people are added to the American Journal of Obstetrics and Gynecology, and not in the context of what went wrong during pregnancy and birth that led to disability, but instead focus on the narrative of how disability enriches the experience of labor and delivery and propels the field of obstetrics and gynecology forward.
While I’m finding more information on disability and pregnancy, which is promising, most of the research is still in the development stage.
Based on the new research that is underway I’m grateful that my curiosity isn’t misguided (phew), the medical world just hasn’t caught up yet. As people with disabilities continue to push for inclusivity and implementation of basic human rights; doctors, including OBGYNs will hopefully continue to learn and grow in their knowledge about how pregnancy affects patients with disabilities. Furthermore, I hope this extends beyond the physical sense and works to unpack the emotional and psychological transformation that is unique to individuals with disabilities who wish to conceive, experience pregnancy, and give birth. It is easily one of the coolest things I have ever done; still, I hope that in the next 5 to 10 years new parents with disabilities will not have to feel lost and alone as I have felt at times.
1. “Pregnancy and Parenthood for People with Cerebral Palsy,” capability-scotland.org.uk, http://www.capability-scotland.org.uk/media/57633/pregnancy_13.pdf. ↩
2. Kylie Jordan, “New Tools to Help Women with Physical Disabilities Make Decisions About Pregnancy,” MHealthLab, January 28, 2019, https://labblog.uofmhealth.org/body-work/new-tools-to-help-women-physical-disabilities-make-decisions-about-pregnancy. ↩
3. Leslie Young, “Women with disabilities not getting the sexual health care they need, experts say,” GlobalNews, February 12, 2019, https://globalnews.ca/news/4953814/sexual-health-disability-women/. ↩
4. “Are you a woman with a physical disability who is thinking about getting pregnant, or been pregnant before?” Health Research University of Michigan, https://umhealthresearch.org/#studies/HUM00146621. ↩
5. Miri Nadler, “9 Things I Learned About Being Pregnant with Cerebral Palsy,” kveller, July 25, 2016, https://www.kveller.com/9-things-i-learned-about-being-pregnant-with-cerebral-palsy/. ↩
6. Liz Alterman, “See a Mom with Cerebral Palsy Give Birth on Her Own Terms in 12 Stunning Photos,” cafemom, September 16, 2016, https://thestir.cafemom.com/pregnancy/200613/see_a_mom_with_cerebral/174563/waiting/3. ↩
7. Angela Garbes, Like a Mother: A Feminist Journey through the Science and Culture of Pregnancy (New York: HarperCollins Publishers, 2018), 194-95. ↩
8. Barcroft TV. “We Won’t Drop the Baby.” Online video clip. YouTube. YouTube, 17 December 2017. https://www.youtube.com/watch?v=0EPdeBaSZ5w. ↩
Over the last several weeks I’ve been torn between my options for anesthetics during my C-section. I still haven’t made a decision as to whether I will choose regional or general anesthesia. There are positives and negatives to both, but generally regional is safer. Regional consists of either an epidural, a spinal block, or a combination of both. I would be awake during the procedure and get to meet Eli (assuming there are no complications) almost immediately after he is born. For general, the anesthesiologist would put me under during the operation, meaning I wouldn’t get to meet Eli until after I wake. On the surface it seems like an easy decision. Afterall, I’ve been waiting to meet Eli for 9 months already. So what’s my problem?
Nerves. In the physical and psychological sense. Here’s the tricky part, cerebral palsy affects everyone differently and most OBGYNs have limited or absolutely no experience working with expecting parents with CP. Based on mine and my doctor’s combined knowledge and experience we’re making our best educated guesses about how to proceed with birth. Doctors explore the unknown all the time. For patients (disabled or not) though, this may be new territory and it is a rightfully terrifying journey. I feel very fortunate to have the OBGYN that I do. Not only is she competent, she has a great sense of humor, and I feel genuinely respected and cared for by her. I am her first expecting patient with CP, but she is constantly adapting to my needs and educating me as we face this new frontier together. Her compassion sets her apart from other medical professionals I’ve met. For instance, annual exams are exhausting for me, a reality she noticed during our first prenatal visit. Her understanding of how my body can act counterintuitive during this common routine differed greatly from past experience:
Some years ago, I was seeing a new OBGYN for my annual when she commented while trying to inch the speculum deeper in my cervix, “if it’s this uncomfortable, how do you have sex?” I can’t even remember my response. Thinking back there are three main points that come to mind during this humiliating and infuriating encounter. 1. This medical professional lacked the empathy to understand how hard I was working to keep my muscles relaxed while also keeping my feet in the stirrups so she could do her job. 2. Fingers and penises are flesh, not metal. 3. I usually prefer a generous amount of intimacy before letting someone near my vagina, thank you very much. Breathing helps reduce the intensity of spasms in my body, but the majority of when and how much the spasms clench is beyond my control.
The spontaneity of my spasms as well as the nerve damage I have acquired because of how hard I’ve pushed my body in the past, in combination with my spasms is the very reason I am so nervous about regional anesthesia. What if I spasm when the anesthesiologist inserts the needle? What if I incur more nerve damage from the epidural or block because I accidentally moved? If so, how will my disability be affected by the new damage? More importantly, what if my spasms interfere with the epidural, allowing me to feel everything, and they have to knock me out anyway?
Even with my doctor’s expertise, I want to know more about the relationship between pregnancy and the disabled body. I want to make sense of my evolving experience as a pregnant disabled person. It is far more complicated than people realize. There are things that only, Tom, myself, and my doctors know… the profound effect that certain compromises to ensure Eli’s safety and my own have had on me. Every parent compromises, yes, but I learned for me, because of my CP, there is a unique price that I have to pay. I am still coming to terms with the reality of these compromises and how they affect my future and my worth as a disabled individual in the United States of America.
Being a former academic, I started researching cerebral palsy and pregnancy. Unfortunately, I found very little information. In addition to a lack of medical information there was a glaring absence of personal accounts from individuals with CP or anyone with a disability who had performed the awesome task of bringing a child into the world. At first, the only thing I found was a fact sheet that stated epidurals are not recommended for expecting parents with CP who have spasms.1 Well, shoot…
The recommendation wasn’t just alarming, it was cryptic. Were epidurals not recommended only during vaginal births or did it include cesarean sections as well? What type of spasms was the document referring to, visible or hidden? For which type of palsy was this recommendation based on? For inquiring minds, I have diplegic cerebral palsy.
I spoke to a close confidant who suggested that maybe the reason why nothing exists on the topic is because disabled parents have normal births. In so many ways this is a novel idea. I want so much for it to be true. It would be so beautiful if disabled parents having babies was the norm. Individuals with disabilities are people too, so of course we’d be birthing just like everyone else, right? After our conversation I began to wonder if I was going down a dead end. Maybe I’m being too sensitive. It wouldn’t be the first time. I have struggled with anxiety through the whole pregnancy. Perhaps my brain is working overtime. Yet the feeling that I am not alone in my confusion, frustration, and isolation as an expecting disabled parent continued to pull at me.
The universe felt my pain and insecurity, because the next day I read an article titled “New Tools to Help Women with Physical Disabilities Make Decisions About Pregnancy”. The article highlights the lack of resources surrounding pregnancy for individuals with physical disabilities, primarily due to misguided beliefs about disability that persist in our culture. Associate Professor of physical medicine and rehabilitation, Claire Kalpakjian, articulates, “... Even though there are thousands of women with physical disabilities, such as spinal cord injury, cerebral palsy or multiple sclerosis, who become pregnant each year, they still deal with stigma.”2 To help address this gap in information and support for potential disabled parents, the University of Michigan is utilizing two grants to create decision-making tools to help individuals with physical disabilities make informed decisions based on their condition(s) and needs about pregnancy and childbirth. The grants could go a long way in helping to eradicate the uncertainty and misinformation about sexual health, reproduction, parenthood, and disability. I also foresee this as an opportunity to create a more symbiotic relationship centered on trust and understanding between patients with disabilities and their medical professionals. In addition to a lack of discussion about parenthood for patients with disabilities medical professionals are finding that many disabled people aren’t being given basic routine health screenings on a regular basis. One of the reasons for this lack in services is the ongoing myth that people with disabilities are not/can’t be sexually active.3 The good news is the subject of pregnancy in connection with disability is starting to gain traction in the medical field. Researchers and doctors are realizing the important part disability plays in reproduction and sexual health and that it needs to be more thoroughly investigated. Recently a friend shared a link to University of Michigan Health Research where they are seeking to collect information from women with physical disabilities about conception and pregnancy.4 Reading about these projects has produced a lot of excitement while validating my own quandaries regarding the lack of knowledge about pregnancy and disability in the medical field.
It still wasn’t enough, though. I wanted more.
So I continued to scour the internet and finally found two personal accounts from mothers with CP who shared their birthing process. One had a C-section and two epidurals that didn’t take because of nerve damage created by her spasms (hence my earlier question about regional anesthesia).5 The other mother had two vaginal births with no medication despite being told she would have to undergo a cesarean section.6 I was enraptured by their tales. I inquired with a friend who has CP about her experience with birth. It differed from the two individuals’ stories above. When it comes to pregnancy and birth there is no crystal ball. Everyone is unique, therefore, how they experience pregnancy and birth will be entirely different. The truth is there is absolutely no way of knowing how my body is or isn’t going to respond to medication or to surgery. It’s the luck of the draw. Sometimes I wonder if I would be able to have a vaginal birth… notice my word choice here. Vaginal birth. During pregnancy vaginal birth is often referred to as natural birth. This is a defeating perspective that often makes soon-to-be parents feel less than, dehumanizing them during one of the most joyous and complicated moments of their lives. Every birth is natural. In her book, Like a Mother: A Feminist Journey through the Science and Culture of Pregnancy, author Angela Garbes says it best, “No matter how you give birth, it requires all sorts of stretching, pushing, squeezing, stitching, rearranging, resetting, and healing.”7 Despite my wonderment about vaginal birth I trust my doctor and believe this is the safest route for me and my baby. Knowing it is the right decision doesn’t automatically make it less scary. While everyone assures me C-sections are a common and safe method of delivery, at the end of the day, it’s still major surgery, and I am the one who has to recover.
Another great resource that captures parenthood from the perspective of parents with disabilities is the documentary, We Won’t Drop the Baby, which follows couple with CP, Adele and Laurence, as they welcome their second child into the world. The documentary was created by BBC One and IWC of the Zodiak Media Group and is currently featured on YouTube. Plus, it’s narrated by David Tennant, so it’s easy on the ears.8
My experiences as a pregnant disabled person matter, as do the experiences of every other person with a disability who is thinking about becoming a parent, or asking the question, “what the heck are pregnancy, birth, and parenthood going to look like for me?” Just because our stories aren’t recorded, doesn’t mean they don’t exist. It is imperative that more stories and research about disabled people are added to the American Journal of Obstetrics and Gynecology, and not in the context of what went wrong during pregnancy and birth that led to disability, but instead focus on the narrative of how disability enriches the experience of labor and delivery and propels the field of obstetrics and gynecology forward.
While I’m finding more information on disability and pregnancy, which is promising, most of the research is still in the development stage.
Based on the new research that is underway I’m grateful that my curiosity isn’t misguided (phew), the medical world just hasn’t caught up yet. As people with disabilities continue to push for inclusivity and implementation of basic human rights; doctors, including OBGYNs will hopefully continue to learn and grow in their knowledge about how pregnancy affects patients with disabilities. Furthermore, I hope this extends beyond the physical sense and works to unpack the emotional and psychological transformation that is unique to individuals with disabilities who wish to conceive, experience pregnancy, and give birth. It is easily one of the coolest things I have ever done; still, I hope that in the next 5 to 10 years new parents with disabilities will not have to feel lost and alone as I have felt at times.
1. “Pregnancy and Parenthood for People with Cerebral Palsy,” capability-scotland.org.uk, http://www.capability-scotland.org.uk/media/57633/pregnancy_13.pdf. ↩
2. Kylie Jordan, “New Tools to Help Women with Physical Disabilities Make Decisions About Pregnancy,” MHealthLab, January 28, 2019, https://labblog.uofmhealth.org/body-work/new-tools-to-help-women-physical-disabilities-make-decisions-about-pregnancy. ↩
3. Leslie Young, “Women with disabilities not getting the sexual health care they need, experts say,” GlobalNews, February 12, 2019, https://globalnews.ca/news/4953814/sexual-health-disability-women/. ↩
4. “Are you a woman with a physical disability who is thinking about getting pregnant, or been pregnant before?” Health Research University of Michigan, https://umhealthresearch.org/#studies/HUM00146621. ↩
5. Miri Nadler, “9 Things I Learned About Being Pregnant with Cerebral Palsy,” kveller, July 25, 2016, https://www.kveller.com/9-things-i-learned-about-being-pregnant-with-cerebral-palsy/. ↩
6. Liz Alterman, “See a Mom with Cerebral Palsy Give Birth on Her Own Terms in 12 Stunning Photos,” cafemom, September 16, 2016, https://thestir.cafemom.com/pregnancy/200613/see_a_mom_with_cerebral/174563/waiting/3. ↩
7. Angela Garbes, Like a Mother: A Feminist Journey through the Science and Culture of Pregnancy (New York: HarperCollins Publishers, 2018), 194-95. ↩
8. Barcroft TV. “We Won’t Drop the Baby.” Online video clip. YouTube. YouTube, 17 December 2017. https://www.youtube.com/watch?v=0EPdeBaSZ5w. ↩
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