“In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing”.
Ten years ago I was allocated to care for a woman in the birth unit. That shift changed my life forever. Not because it was the first time I’d spent 12 hours in a dark, quiet room caring for a woman who lives with a disability, but because I got well and truly schooled by Jane (not her real name) that day.
I treated Jane like she was just any other woman who was going through the ‘process’ of birth. Something that was a huge part of her life was something I was afraid to acknowledge, so I detached myself from Jane and her disability.
I failed to build a solid rapport with her, I offered her the very minimal support I could muster and I didn’t respond adequately to her individual needs. I gave suboptimal care. In fact, it was barely care in and of itself.
I was uncomfortable, ignorant and fearful as I circled the world of disabilities. I faked my confidence and enthusiasm, ticked my boxes, crossed my ‘T’s and dotted my ‘I’s.
Physically, I was present in the room. Emotionally, I was elsewhere. I was ‘ableist’!
Luckily, for me, Jane was not just any other woman. She was a strong, capable, fierce, knowledgeable, brave, courageous woman with good health literacy. This was not her first rodeo! She refused to be humiliated or stripped of her power, she refused to humour my insincere attempts to engage with her and she refused to accept ‘her place’ in an over-medicalised paternalistic factory processing line.
Ten years ago Jane gave me a beautiful gift.
Through her Auslan interpreter, and in between contractions, Jane gently reproached me. She offered me the opportunity to reflect on my discriminatory behaviour and my many failings. She reminded me that although she lives with a disability, by which she refuses to be defined, she also lives with many abilities.
Being a midwife puts me in a position of power and it’s up to me how use it. I can choose to follow the medical ableism script and further disenfranchise woman who are already marginalised, or I can choose to strengthen my relationship with each and every woman in my care.
I choose the second option. I choose to empower woman, to support women, to encourage women to participate actively in their birth, and to make each birth a positive experience they will remember forever, for all the right reasons.
These are the lessons Jane taught me, from A to Z;
Adapt – modify your practice to embrace her differences and special needs. Change the birth room and access any resources, devices, tools, interpreters and healthcare services as required. Advocate on her behalf.
Bravery – it takes courage to care for a woman as she births and it takes courage for her to become a mother.
Choice – allow her to choose how and where she births. She needs to be in Control of her body. Connect with her and build rapport. Celebrate with her as she experiences one of the most powerful moments of her life. Continuity of care is paramount.
Discover – allow her to discover what her body is capable of.
Empathise with her as she is experiencing one of the most vulnerable moments of her life. Empower her to boost her confidence.
Focus – on the task at hand, but be Flexible and Friendly.
Gentle – she may have a trauma reaction to hospitals and healthcare providers. Explore this and try to make this a positive touchstone life experience.
Humility – ask questions and seek clarification. Honesty is always the best policy and she will appreciate your candour.
Integrate – her care should be an integrative team effort; the common aim is for her to remain comfortable, safe and satisfied with her care.
Involve – her support partner, doula and disability support workers in her care. Invite them to assist with comfort measures and coping strategies.
Journey – alongside her as she transitions into motherhood.
Kind – it costs nothing to be kind. Be Knowledgeable as she is relying on your expertise to get her through this challenging time.
Laughter – it really is the best medicine. Share in her joy and jubilation.
Mutter – midwifery mutterings are a meaningful way to encourage her. She might not remember what you did, but she will remember what you said and how it made her feel.
Normalise – she might not want to be defined by what she can’t do, but rather what she can do. Negotiate and explore her birth preferences so you can best meet her expectations.
Offer – physical touch such as massage or effleurage. Observe the mood in the room.
Provide – relevant, current and accurate information so she can make informed choices. Be Perceptive to any changes in her physical and emotional needs. Problem solve and help her into different positions.
Quiet – observe her progress Quietly and minimise interruptions
Reassure – tell her you have confidence in her and her ability to give birth. Recognise any signs that she is becoming tired, disheartened or disengaged.
Support – her in myriad ways; whatever works.
Talk – speak to her in the same way you would like to be spoken to. This will help build mutual Trust. Regardless of the type of disability she lives with, she deserves respect; no one likes to be patronised.
Understanding – take the time to appreciate how she is feeling about birthing her baby; she will no doubt have mixed feelings. Urge her to speak up if she needs you to care for her in a different way.
Validate – if she reports pain, believe her. Don’t dismiss her or her complaints.
Watch and Wait – The less we do the more we give (Downe 2014).
Xenacious – encourage your colleagues to aim for changes within your facility that benefit women who live with a disability.
Yield – to no one and nothing. Be assertive on behalf of her and her birth preferences, safety prevailing.
Zealous – be passionate about your work. As her midwife you are responsible for her wellbeing. Be protective of her and her choices.
As you go forth and midwife, you too may be allocated to care for a woman like Jane. Remember, when faced with a difficult situation, one in which you feel uncomfortable, ignorant or fearful, in that moment of decision, the worst thing you can do is nothing!
Author: Amanda Liddell (Education Project Officer)
disAbility Maternity Care