This is the story of how persistence and advocacy helped me reclaim my hope and take the final steps toward freezing my eggs. A journey of heartbreak that pushed me closer to the edge of total despair, than I ever had been before. Then after months of setbacks, I found a team that believed in me and my right to choose motherhood.
Let's Make IVF Ableism A Thing Of The Past:
Please reach out to me directly through my email icantstandpodcast@gmail.com or via social media. My handle is @Petahooke https://www.instagram.com/petahooke/
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Episode Transcript:
Peta [00:00:00] This limited series, Eggs contains discussions of fertility, IVF and ableism. How long will I have to wait? I have asked myself this so many times about my independence, my career, my love life. I don't think the fact that I have a disability makes me unique in needing answers to this question. Disabled people might have to ask it more often, though, particularly when asking How long do I have to wait to experience inclusion and accessibility in my community? Due to the structure of society. Many disabled people I used to a massive amount of life. I mean that other people just don't have to manage. Life, I mean, can define our lives.
Believe it or not, there are no days off from being disabled. So when I was first told of the issue of getting a portable hoist for the day of my egg retrieval, I told my specialists not to worry the faceless people. We needed to get this approval from. I had probably never experienced the level of determination. Or should I say stubbornness that a disabled person can harness. We are experts at being told no. And finding a way regardless. I also felt that the inherent logic of the situation would be I ally. How could a piece of portable equipment that can be found in hospitals, schools and homes all across the world not be sourced? A simple Google search will show how readily available they are to hire.
We've run into a roadblock, my specialist said, brow furrowed. They said they can't find a hoist for the procedure. I should have said can't. Or do you mean they won't? Front of waste. But instead I responded. Okay, well, I have one. I can bring it with me and it can be used on the day of the procedure. I'll let them know, my specialist said. In the meantime, we require every patient to undergo counselling to make sure you understand what to expect about the process of IVF. I will do whatever is needed to be done, I said, determined. I went to the counselling sessions, thankfully via Zoom with a group of other people, all of us Anonymous. Reduced to black squares, put on mute eye names were replaced by serial number like we were going to war. I've heard back from the hospital, my specialist said, looking over his small round glasses as he spoke to me. For health and safety purposes. They can't let the nurses operate your hoist that isn't the hospital's equipment, even if it is hired from a reputable organisation. Butterflies now appearing in my stomach. I said, okay, well, my parents will help me with the hoist. Then no one else needs to touch it. They will just be there to support the process. Remember, I just need to be transferred onto the bed. Nothing else. The whole process will take less than five minutes.
I'll ask them. My specialist assured me. Then sliding a few papers across his desk, he added, In the meantime, can you fill out these forms to get you in the system? So once we get the okay, we can start this process as quickly as possible. The forms were a bit of a shock. Despite the fact I was just there to freeze my eggs. Every page asked me that my marital status and my partner's details. Pages and pages where I wrote not applicable. Repeatedly outlining that in fact, yes, I was single. Seeing so many blank sections on a page was harder than I expected. I didn't have the answer to the part in a section, just like I didn't have the answer of when my eggs would be frozen. I haven't heard back. I heard my specialist say another week sitting in his office. Can you follow up with them, please, and tell them I'll sign a waiver, whatever it takes to be transferred onto that bed. Hearing so many noise from the hospital and from my specialists felt contagious. I started saying no to other parts of my life. I started dropping the ball. My career was not my priority anymore. I wasn't in the hustle. I was exhausted every week and every month that passed by, I felt more upset. I was a disability advocate, and yet this was a new form of exclusion and idealism that I didn't feel equipped for. The tools that I normally pulled out of my mental health toolbox were not doing their job. All I seem to be achieving was ordering yet another box of tissues in my weekly shop. They now believe the room is too small to do the transfer with a portable hoist. My specialist said. Concerned. They've advised me to direct you to the public system. There's always a way. I don't understand. I could get in the hoist in the hallway, and then they could push me to the bed. In the emergency department in that very same hospital. Nurses don't ignore the patient if they collapse on the floor. Why am I any different? I'm sorry, Peta. But I pay for private health care. I don't feel right about taking a bed from another woman who doesn't have the choice. I will keep trying. But in the meantime, I bring out the head of the public hospital to let them know of your situation. There could be another issue. I held my breath.
Public hospitals are not keen to take private patients. As you've just articulated yourself, we have to get special permission for you to use the system as a private patient. Meaning it could be a while before you freeze your eggs. Surely once you explain the situation and outline that I have now been given no other choice, they will accept me. He hesitated. Also, I must tell you, as I'm a specialist in the private system, I will not be permitted to do the procedure as your doctor. You need to go public. This is ridiculous. A friend passionately told me over breakfast. I know it's ridiculous, but I'm not ready. I don't want my medical information to be public yet. Plus, we both know the backlash that disabled women face when speaking out about motherhood. I'm not in the right place to fight another person. Well, let's face it. It could be a mob of people. I will go public one day when I'm ready. Medical professionals need to better understand our needs. We have a right to undergo any medical procedure, just like everyone else. I was now in a routine of follow ups via phone calls and emails with my specialist. I was stuck on a roller coaster ride going round in circles and never really progressing. I was screaming into the wind. No matter how drastic the drop, no one seemingly could hear me. But I refused to go away. I nudged, nudged, nudged, keeping on their back, waiting for the. Okay. Call me back at the end of the month. Peter We're following up constantly with the public hospital, but this decision will take time. So at the end of every month with the rest of my life on hold, I called and emailed, asking for answers. No, we haven't heard anything. Call back at the end of next month. Of those people who knew I would text in to see how I was going. Knowing that the end of every month meant that I might get more answers. I told them I felt like I was stuck in life's waiting room. I just wanted to break down the door. I wanted to progress.
Then one day I received a call. It's my specialist's receptionist. Peta. The public hospital has requested more information about your disability. Can I get some details? Sure. I'm happy to share whatever's needed. You have my permission, but I don't understand why this information is relevant to freezing my eggs. I am a woman. I am 33 years old. I have cerebral palsy and I can't stand, walk or transfer myself. I need a hoist to transfer me onto the bed. That is all I'm requesting. The atmosphere on the Cole shifted. There was a long pause. Another long pause. Then a sentence fell out of my mouth. I had not been brave enough to say. It feels like I'm being asked these questions so they can determine if I'm capable of being a mother. Which isn't the place. I just want to freeze my eggs before it's too late. Please. We said goodbye and I hung up.
I called a friend. She was in our car. The kids were in the back seat. I feel I have to justify myself. I told her my voice, stumbling over the words. Justify my ability. No one else has to do this. You don't need a license to be a parent. Suddenly I was sobbing, the sort of sob I don't let people see or hear. But it felt so raw that I couldn't stop it. With my calls and emails, still not resulting in any answers from my specialist or the hospital. I found myself back at my GP. It wasn't lost on me that I was back here after nine months of trying to start this whole process. My GP wrote on the referral that she was, quote, bloody angry on my behalf. After taking a breath, she thought better of it. I deleted the word bloody. It was heartening to see her mad on my behalf, validating that my experience had not been okay. With two new referrals now in my possession. Before I booked an appointment with Aetna, I called them. I told them my story to this point. I didn't have the luxury to waste time anymore and I needed to know if I was picking the right horse to win my fertility race.
The first clinic was shocked to hear what I had been through. But I was told that they didn't have a choice either, and I would likely run into the same issues. The second one was more even keeled and matter of fact about my experience. I was advised to sit down with this specialist and discuss how she could help me. Would you like to do this appointment in person or via Zoom? Peter. To this appointment. I wore a white shirt, mauve jumper and wore my men's braids as a choker. Again, subliminally trying to make my message clear. Please believe that I am capable. I wasn't far begging at this point on my computer screen. A blonde woman appeared. Her favourite colour was clearly pink. She wore it with confidence and strength. This was Dr. Lynn Brew Meister. I told her my story. She listened intently. When I asked her if a waste could be sourced, she said to me directly, looking me straight in the eye. If the hospital doesn't supply one. That would be discrimination. Peter. Every person's experience with fertility is unique to them. It makes such a difference to find the right team for you.
Number One, Fertility might not be right for you. But after the time I had fighting for my reproductive rights, it was a surreal experience that I might actually get to do this. I might actually freeze my eggs. I had found my team of angels ready to be flexible, ready to help me. It wasn't instant and easy. From that time on, we still struggle to get blood tests, and blood at AP still had to wait to get approval for that hoist to transfer me onto that bloody hospital bed. And I still had not discovered how fertile I was. The day The unit nurse manager at Number One Fertility Paula Scandlan told me the hoist had been approved by the hospital. I couldn't hold in my tears. I have no words to which to fully articulate how thankful I was. They gave me back hope and without hope, life gets really hard. I was crying for myself, of course, but I was also heartbroken to think that there might be other disabled women that didn't get the chance to freeze their eggs because of inaccessibility. And I told them I knew that this experience had pushed me to the edge of despair like I had never experienced before. I only had to live with hopelessness for ten months. Also. I couldn't stop thinking of the people who didn't get so lucky.
We are privileged in Australia. Our reproductive rights are fiercely protected and felt seemingly secure. Before this experience, I didn't realise disabled women didn't have the same privilege. This is the reason why I've created this podcast to make sure the future is better for disabled women. We should all have the right to choose if or not we want to be a parent. If you face similar barriers or if you work in the health care system. I want to share your story. Please reach out to me directly through my email icantstandpodcast@gmail.com or via social media. My handle is @Petahooke, spelled P.E.T.A.H.O.O.K.E. You can share your story anonymously if needed. Just let me know. I may have found hope, but there are countless other women out there still waiting for their chance. In the next few weeks, I'll be back with new episodes, sharing the reality of what it is like to undergo IVF when you have cerebral palsy. And I hope to be able to share more information about how we can work together to make the IVF system more accessible for everyone. I hope to try and fix this. I am just one person with one story, but with your help, I hope it will be enough. I'll see you soon for part four.
Thank you for listening to Eggs, a limited series from the people or the person that brings you the I Can't Stand podcast. This series was produced and edited by me Peta Hooke. If you've enjoyed this episode, please consider sharing it with someone who you think might benefit from hearing it. And if you'd like to support the podcast, don't forget to subscribe. Leave a review or follow me over on Instagram. Until next time, thank you so much for listening. Take care.
I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation of which I record the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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