Series: Welcoming All Families: Supporting People with Disabilities During the Childbearing Year

 By Janelle Durham, MSW, LCCE

Today I would like to share another post in the Welcoming All Families series. This post is written by a longtime friend and colleague Janelle Durham, who was one of my trainers when I was becoming a childbirth educator more than 14 years ago. Janelle has contributed from time to time to Science & Sensibility, and I appreciate her insight today on how professionals can create a welcoming space for people with disabilities who may be attending their childbirth class. You can find the complete collection of posts in the “Welcoming All Families” series by following this link. – Sharon Muza, Science & Sensibility Community Manager

Janelle 28 wks 3.jpgEvery disability is different

The needs of each person with a disability are unique and depend on such things as:

  • What is the disability? As should be obvious, the needs of a leg amputee are different from the needs of a visually impaired person which are different than for someone with hypermobility syndrome which are different than for someone with Down syndrome.
  • How long have they had the disability and how experienced are they at working around it? There’s a big difference in the adaptive abilities of someone who has been disabled since birth vs. someone who had non-disabled years but has now had a disability for a long time vs. someone who is new to their disability.
  • What is their self-image/identity? If they (and the people around them) think of themselves as “disabled” they are likely to have more worries about the childbearing year than someone who doesn’t see their disability as a primary part of their identity or life experience.
  • Is the disability permanent? One of my colleagues had a support partner in a class series who was going to be in a wheelchair for 12 months recovering from a bad accident.       Their needs might be both similar and/or different from someone who will be using a wheelchair always.
  • Intersectionality – As a white, educated, middle-class, straight, cisgender person from a happy family, I have a whole lot of privilege which has made having a disability easier for me. For example, when I begin speaking with a health care provider, in my non-accented voice using technical vocabulary, I immediately receive more respectful treatment. A person of color, or a transgender person, or Medicaid client with a disability are all less likely to have a history of experiencing the respectful treatment they all deserve. They are more likely to have experienced discrimination, bullying, and violence, and may find it more challenging to trust their care providers and other professionals they are interacting with during their pregnancy and postpartum period.

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. My disability is very visible to everyone I encounter, but I don’t really think of myself as “disabled” because there’s little I can’t do. I can’t “run”. But, I can ski, swim, rollerblade, 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.)

Janelle 32 wks.jpgMy care providers vs. others

During my pregnancies, I don’t remember my disability being a big issue for anyone. No one ever 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 a hospital on the far side of the city. 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 (including choosing another care provider), and she did end up planning and having a vaginal birth.

What can a birth professional do?

  • First and foremost: Assume the pregnant parent (or partner) is capable of pregnancy, birth and baby care. (You may be one of the few who treat them this way.)
  • If their disability is physical, not cognitive, then be sure to treat them as a fully cognizant adult. Any adult who uses a wheelchair can tell you countless stories of when people ask their companions “what do they want” rather than asking the person in the wheelchair directly.
  • If you see accommodations that you think could be made, ask if they would like your help brainstorming how to handle something. If the expecting person or the support person has had their handicap for more than a few months, they probably know a great deal more about their 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.”
    • 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.” When you are teaching physical activities in a childbirth class, such as positions for labor, explain to all your students what the goal is, and each of them (including the parent with a disability) can determine the best way to adapt or modify a suggested position to work for them.
  • 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 do 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 containing a pair 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.
    • Don’t constantly point out their potential need for adaptations during class. For example, when discussing the use of a peanut ball with an epidural, don’t call out “you may need to do this differently because of your disability.” Just make sure that throughout your class, you talk about how you will offer a wide variety of tools, explaining the goals and the challenges of each one, and each parent can try out those tools and adapt them to best meet their needs.
    • 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 have an undertone of “something’s wrong with you. You’re less capable of birthing and parenting than other people are.”
  • man in wheelchair with baby.jpgBe 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” 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! I feel mentally competent with my glasses on, and severely limited without them, so being separated from them is not just a physical limit, it’s also an emotional distress.
  • Don’t treat their disability as an inconvenience for you. Yes, sometimes it’s difficult to manage the extra needs someone has. They know that. You pointing it out doesn’t help. One of my friends talks about how often health care providers sigh when managing his braces and appliances. When I had a deaf family join my class, I worked hard to figure out where best to seat them and their interpreter, but I was careful not to express to them that it was a challenge.
  • A person with a disability often has a long history with health care providers, medical institutions, and facilities. Their experiences may be positive, negative, or a very complex mix.
    • If you sense any defensiveness or animosity toward you, or if they “over-react” to a situation, realize there may be a very good reason for their reaction.
    • Respect that they 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 they’ve learned over years of medical treatment, respect that. I appreciate when people 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 them: “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 are available. Don’t assume you know which options are the best match. Let them choose the support services that they feel best meet their needs.
  • Believe them. If they tell you “this is my experience” or “here is what I need”, then listen to them and try your best to understand them. Don’t tell them they shouldn’t feel that way or that other disabled people you work with haven’t said that. Respect their wisdom.
  • Be sure that your website and printed class information is clear about the accessibility options for those who may need it. Asking on an intake or registration form if there are any accommodations that can be made or any special requests that you can prepare for in advance will allow the family to have the best experience possible. That may involve turning on closed captioning on a film, providing printed material in a larger font, making available appropriate furniture or other modifications if there is a physical handicap that requires it.
  • It may be the pregnant person who is disabled or it may be the partner.  Assume unless told otherwise that both people want to be as involved and participatory as possible given their physical limitations.

The same but different

Families with disabilities are moving through life just as other people do. They get pregnant, birth and raise children while living with their physical or mental limitations all the time. They are the best expert on themselves and what their needs are. They know how they would like to be accommodated if anything is required.

Don’t be afraid to reach out privately to connect and be sure that you can support them fully in getting the most out of your childbirth education classes. Check in from time to time to adjust what you are doing if needed.

Providing a welcoming and appropriate learning environment and topics will allow them and all families to leave your class secure in their ability to birth and parent to the best of their ability.

About Janelle Durham

Janelle 2016 headshot.jpgJanelle Durham, MSW, LCCE has taught childbirth preparation, breastfeeding, and newborn care for 18 years. She trains childbirth educators for the Great Starts program at Parent Trust for Washington Children and teaches young families through Bellevue College’s Parent Education program. She is a co-author of Pregnancy, Childbirth, and the Newborn and writes blogs/websites on childbirth education; parenting toddlers & preschoolers, and teaching science to ages 3 - 7. Contact Janelle and learn more.

2 Comments

Always presume competence

June 1, 2017 04:38 PM by Katie Rohs

I love this post. Thank you to Sharon for including it in your Welcoming All Families series, and thank you to Janelle for being so open about your experience.

I would submit that it is important to presume competence and ability with all disabled persons, even if it is apparent they have an intellectual disability. Presuming competence, and adjusting as needed to their intellectual ability is - in my experience as the parent of a disabled daughter - much more inclusive and welcoming than presuming the intellectual capacity is lower than it maybe is. 

I love everything else you said, Janelle - the particular phrases you've suggested, the ways to approach the family about how to accommodate them - it's perfect.

Thank you!

Always presume competence

June 11, 2017 05:01 PM by Janelle

Katie, thank you so much for your comment. I agree completely.

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