Pregnancy and Disability

Janelle 32 wks

Someone recently asked me to share my perspectives on how perinatal professionals can provide sensitive, supportive care for people with disabilities. Here are some initial thoughts on that question.

First, a caveat to any advice I offer below: I can only speak to my own experience. The needs of each person are unique and depend on such things as:

  • What is the disability?
  • How long have they had it and how experienced are they at working around it?
  • What is their self-image / identity – if they think of themselves as “disabled” they are likely to have more worries about the perinatal period than someone who doesn’t see their disability as a primary part of their identity or life experience

My experience: I had bone cancer when I was 15 years old, and had my leg amputated above the knee. I wore an artificial leg for a few years, but discovered I can move around faster and easier on crutches than with an artificial leg. I don’t really think of myself as “handicapped” because there’s little I can’t do. I can’t “run” very fast. But, I can ski, swim, roller-blade, ice skate, and ride a tandem bike. I can carry things while walking on crutches, take care of all my household chores, drive, work full-time, and so on.

When I became pregnant with my first, I’d already been an amputee for 11 years, so I was very used to making the physical adaptations I needed to make. So, throughout my pregnancy, I never questioned my ability to handle pregnancy, birth, and caring for a baby. I didn’t know all the exact details of how I would adapt everything, but I had complete confidence I would figure it out. And I did… I’ve now birthed and cared for 3 children – I don’t actually find it that difficult.  (OK, honestly, we all find parenting difficult! I’m just saying that having one leg did not make it particularly more challenging.)

My care providers vs. others:  During my pregnancies, I don’t remember my disability being a big issue for anyone. My care providers never implied that there would be anything especially challenging about my case, which I appreciated.

But that’s not always the case. Once a public health nurse called and asked me to doula for someone delivering at Valley. I told her I didn’t travel that far. But then she told me why she’d called me specifically. The client was a double amputee who used a wheelchair. She had been told that she would need to deliver by cesarean because she was an amputee. I was dumbfounded! It’s not like you need legs to have a vaginal birth. I ended up not assisting that mother because of timing, but I did meet with her and talk to her about her options, and she did end up planning and having a vaginal birth.

What care providers can do:

  • First and foremost: Assume she is capable of pregnancy, birth and baby care. (You may be one of the few who treat her this way.)
  • If you see accommodations that you think could be made, ask her if she would like your help brainstorming how to handle something. If she’s had her handicap for more than a few months, she probably knows a great deal more about her needs than you do. Respect that.
    • For example, I happened to have a dad who was an arm amputee attend a newborn care class I was teaching. I approached him on break, and said “I am wondering if you have any specific questions that are unique to your situation. I don’t know anything about having one arm, but I know a lot about baby care, so if you have things you’re wondering about, maybe you and I can put our knowledge and experience together and brainstorm some kind of solution together.”
    • Once when I attended a prenatal yoga class, the instructor approached me before class, and said “let me know if there’s anything I can do to help you with the exercises.” I told her: “I can usually do a better job than you can of figuring out how to adapt things, but it helps me to know what my goals are. So, when you teach a position, if you can tell me whether the goal is to stretch my hamstring, or stretch my calf muscles, or strengthen my glutes or whatever, that helps me adapt the exercise in a way that reaches that goal.”
  • Don’t “other” someone.  Don’t do things that imply that they are a weird aberration from a normal human being. Examples from my experience:
    • When a caregiver is going to a pelvic exam on me, they always pull out both stirrups as per their usual habit. I like it if they then calmly put one away instead of getting all flustered and awkward when they realize that I don’t have a foot to put in the right side stirrup.
    • When a nurse opened a package of non-slippy socks, I liked that she calmly set one aside on the table, saying “here’s an extra for later”
    • If you make a “mistake”, calmly apologize and move on. Don’t make a big deal of it.
    • If someone gushes over me like “wow! You’re so brave to take this on. If I were handicapped, I would be too afraid to try this,” they may think that’s supportive, but it’s easy for that to come off as “something’s wrong with you. You’re less capable of parenting than other people are.”
  • Be sensitive about their “appliances”. Their wheelchair, hearing aids, glasses – whatever – should be treated with the same respect with which you treat their body.
    • My crutches may seem like inanimate objects to you, but they are an essential part of my independence and mobility. It is VERY important to me that no one take my crutches and move them across the room without my permission. Although I can hop short distances, I can feel “trapped” in place the second my crutches are out of my reach, which can be anxiety inducing.
    • I also wear glasses as I am very near-sighted. I need to know where they are at all times, because when I don’t have them on, I can’t find them! And I feel mentally competent with my glasses on, and severely limited without them.
  • A person with a disability also often has a long history with health care providers and medical institutions. Her experiences may be positive, negative, or a very complex mix.
    • If you sense any defensiveness or animosity toward you, or if she “over-reacts” to a situation, realize there may be a very good reason for her reaction.
    • Respect that she may have some expertise that a non-disabled layperson might not have. For example, I can tell you that I’ve had many I.V’s in my life, and been told by many health care providers that my veins are tiny and tend to roll, and it’s hard to get an I.V. into me. If a patient tells you something like that, respect that. I appreciate when care providers have said “Oh, thanks for letting me know. I’m actually going to ask X to come in and start this I.V. because she’s a wizard at finding a vein.”
    • Ask her: “I’m guessing you’ve had some experience with medical care – tell me what kinds of things you find most helpful or let me know if what I’m doing is not helpful.”
  • Don’t assume that their handicap defines them. Although the fact that I have one leg is certainly the first thing people notice about me, it is only a very small part of all the things that I am.
    • Someone once asked me: “Wouldn’t you have loved to take a childbirth class that was specifically aimed at people with disabilities and that could really focus on your unique needs?” I answered “not really.” Not that I have anything against the idea, but it also didn’t feel like something I needed. When I was pregnant for the first time, my disability was old news. I didn’t need peer support with it. Becoming a parent for the first time was new… I needed support from other expectant parents. Whether they had a disability like me, or liked Broadway musicals like I do, or enjoy Indian food like I do didn’t matter. The key was that they were other first-time parents like me.
    • If there are support services in the community that are unique to specific populations, learn about them! When you have a client that fits that demographic, let them know the resource is out there. But also tell them about all the other support services that might be a good match for them. Don’t assume you know which are the best match. Let them choose the support services that they feel best meet their needs.

 

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