February 3, 2025 • 19 mins
What happens when disability isn't part of the plan? From inaccessible medical equipment to dismissive policies, I uncover the systemic challenges of freezing my eggs with cerebral palsy. This episode is about resilience, advocacy, and finding the strength to fight for what’s right.
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/
You can share your story anonymously if needed.
Transcript: part-two-when-the-system-isn’t-ready-for-you
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This limited series Eggs contains discussions of fertility, IVF and ableism.
(00:21):
When is the right time to freeze your eggs? I
know for many women they have this question of rolling
around on a loop in their heads. It is a
privileged question to be able to even ask ourselves, both
financially and scientifically. Between the period of twenty eleven and
(00:48):
twenty twenty one in Australia and New Zealand, the rate
of egg freezing and the demand for these services have
been said to have risen by one thousand, five hundred percent.
Was I going to be part of that statistic? The
first conversation I ever had about freezing my eggs was
(01:11):
with my mum. A small segment she had heard on
talkback radio had got the wheels rolling in her mind.
A presenter had mentioned a group of doctors on a
golf course. These doctors had decided to support their daughters
by helping them with the cost of freezing their eggs,
(01:34):
an additional birthday present, landing in their bank account on
their thirtieth birthdays. My mum has always been direct, never
wasting a minute of life. If something can be said
as clearly and matter of factly as possible. She was
(01:54):
the woman to do it. I think you should think
about freezing you around egg poss she said. My motto
in life is prior preparation prevents piss paul performance. However,
I felt hesitant about freezing my eggs. It was a
(02:16):
big step, particularly for someone who doesn't walk, to take.
If I chose to do this, it was the clearest
sign I could give to the world, but also to
myself that I back myself, that I believe in myself,
(02:37):
in my ability to be a mother, that I believed
in a future where it wouldn't just be me. My
instincts told me the medical system might not be ready
for someone like me, while also balancing the knowledge that
(02:57):
after everything, it still might not happen, they might not
get enough X. Before I go on, I want to
highlight how supportive my parents and my friends have been
in helping me decide if this new path I was
setting myself on was right. I didn't expect the response
(03:23):
that I received. I think after swimming in a soup
of life online as a disabled person and listening to
almost a hundred disabled stories on my own podcast, the
I Can't Stand Podcast, I had my walls up even
with people that I love. I will never forget the
(03:50):
flash of love, excitement, and pure life that danced across
their eyes as I told them thinking about freezing my eggs,
I was getting a small preview of the joy and
elation of what it would be like to tell the
(04:10):
people you love that you and your partner were pregnant.
The more people I told, the more I believed it
was the right decision for me. It felt logical, a
smart step. If I was privileged enough to be able
to do this, why wouldn't I choose to do it.
(04:34):
Freezing my eggs didn't guarantee motherhood. It didn't guarantee me
using them, or if I would have enough to fall pregnant.
But I had to try. I had to give myself
the option. My memory is often based on what I
(05:01):
was wearing and what other people were wearing on that day,
not a skill that is at all helpful, but I
have always been like this. My very first memory is
me being pushed into my very first operation at the
age of three. My pink nighty with the frill at
(05:24):
the bottom match perfectly with my dollies ninety bought specially
for the occasion. I remember the surgeon, saying that my
Dolly and I looked nice and she could stay with
me while I was asleep. Now, in October twenty twenty three,
(05:45):
I found myself with an IVF specialist appointment, and I
thought a lot about what I was going to wear.
I deliberately chose to wear my white broidery on glaze dress,
face of makeup, and bright pink lipstick. I wanted to
illustrate I was in control of my life, that I
(06:09):
was switched on, knowing exactly what I was doing, expecting
to be the very first woman this specialist had ever
seen with cerebral palsy. Look, everyone, I didn't spell my
coffee down my dress on the way here. I have
it together. Please let me freeze my eggs. I was
(06:32):
trying to sway opinion through a bit of manipulative marketing.
I went to the appointment alone. This was a strategic
choice too. I did not want anybody to think that
I expected anyone else to share the primary responsibility of
(06:53):
a child. As I arrived to the medical sweets, I
felt nervous. My anxiety was making me feel every heartbeat
in my chest. The sweet was small, cluttered with furniture.
The medical receptionist entering the phone at a desk that
(07:15):
was so high she didn't notice me. Chairs lined the
walls without a spare space, resulting in ME having to
awkwardly place my wheelchair in front of a chair. The
chair sat empty. Touches of pink felt like the phrase
(07:37):
that had been uttered by the interior designer. I imagined
it was a way to try and make the environment
feel less foreign to female patients, as if the color
pink was going to soften the news women would face
about their fertility in these rooms. My name was called
(07:58):
and I maneuvered into his I felt relief, belief because
I was finally taking control, doing the brave thing. The
specialist started talking and I instantly felt safe. He was warm, intelligent,
(08:18):
and friendly. This was a welcomed but unexpected outcome. I
had expected to have to explain myself my disability and
proved that I deserved to be there, but I didn't
need to. I relaxed. Maybe the world was catching up
(08:41):
and holding us to higher expectations. We talked through how
the IVF process worked. I told him about my period,
my cycle, and I mentioned that I couldn't transfer myself
out of my wheelchair and that I would need assistance,
preferably via hoist. In the medical system, it is something
(09:06):
called a patient lifter. He nodded and assured me we
would figure it out. He then handed me a ferral
for an internal ultrasound and blood tests that he needed
me to do before my next visit. When I endeavored
(09:27):
to find somewhere for the internal ultrasound, I began to
realize how far we have to go to achieve an
accessible system. I rang and emailed several locations trying to
find a place that I had a hoist that could
get me on to the bed to enable the procedure
to be done. I'm sorry, we can't help you. I'm sorry,
(09:52):
we can't help you. I am sorry, we can't help you.
I heard that sentence so many times. I ended up
going to a hospital for the internal ultrasound after all
my hard work success. A portable hoise was waiting for
me with a nurse to help I transfer, and five
(10:15):
minutes later, the sonographer pulled the screen towards me and
showed me my ovaries. Like all good medical professionals, she
didn't say much about how many follicles. I had. She
did mention if I were to get pregnant in the future,
I would need to go somewhere else that has a
(10:36):
hoist for my scans, as they were not able to
do those sort of ultrasounds. A problem for another day,
I thought to myself, after emptying my bladder into a bedpan,
A truly humble experience. The procedure was complete and I
was to wait for the results. On a bright November afternoon,
(11:03):
I received a call from my DW PEA. It seems
to show you have a good amount of follicles, she said.
Then there was a long pause. They have found a growth.
You'll need to get it removed. We can't tell without
a biopsy, but it might be cancer. I can't cope
(11:28):
with cancer, was my first thought. I'm not strong enough.
It would break me. As soon as the call was finished,
I wheeled myself quickly to my laundry. It has thicker walls,
meaning my neighbors would be less likely to hear me,
sob I needed a minute. I texted a few people
(11:54):
in my life to let them know canceled plans, and
sat in my house. I did start to feel thankful
for my non existent baby for helping me find this growth.
Knowing it would have remained hidden if I had not
made this choice to freeze my eggs. I was not
(12:18):
wearing a white dress on my next visit to the specialist.
I can't remember what I wore. My friendly, intelligent, warm
natured specialist evaporated some fears that Monday, peppering me with
statistics of how common this can be, how unlikely it
(12:38):
is that it was anything nasty. My egg freezing will
have to be put on pause, though better to be
safe than sorry. While I was awaiting my day of
(12:59):
surgery to get this growth removed, I thought I should
still push forward and get those original blood tests done.
I am also impossible to get blood out of This
is not related to my cerebral palsy. It's just dumb
luck my genetics. In the past, nurses had resorted to
(13:23):
pricking and squeezing the tips of my fingers to get
blood out of me. But the tests that I needed
this time was not just a vial With my referral
in hand. After fasting, I went to my local blood
collection service. A friendly woman greeted me and assured me
(13:43):
she was an absolute pro at getting blood. I rolled
up my sleeve and she tapped at my arm, willing
my veins to make themselves known. Have you drunk water?
She passes me a rubber glove full of hot water
and peers at my arm. After some time, she said,
(14:07):
I'm sorry, but you're going to have to go to
a hospital. There's no way I can get any blood
out of you. The blood still firmly in my veins.
I presented at a hospital's pathology department. They could fit
in this walking in her wheelchair. Even after using what's
(14:30):
called a butterfly needle, my blood refused to come to
the party. I'm sorry, You're going to have to present
to emergency and request an ultrasound machine. More ultrasound machines.
At least this time, I didn't need a hoist. As
the clock in the emergency department. Near towards midday, an
(14:54):
attractive mail doctor called me through. As soon as he
placed the old to sound on my arm, a big
vein showed itself to the camera. There you are, you
little bugger. Six vials of deep cherry blood filled each tube.
The doctor labeled them and then placed them to be
(15:17):
collected for reasons that are still unknown to me. Now,
I still had to get this blood test done two
more times. The second time they lost the whole sample
after the effort it takes to get blood drawn to
then lose it, and also had my DNA just out
(15:39):
in the world. Was very upsetting. So if I'm going
to meet a cloner myself in the future, I have
one bit of advice for those who use my blood
to make Peter two point zero, Please for her sake,
make her an easier bleed. It felt odd not to
(16:11):
be arriving at the Royal Chidren's Hospital as I had
done so many times before. Undergoing surgery for me is
like riding a bike. I have done it so many
times before. Little Peter did this without fear, so adult
me tried to do the same, trying not to think
(16:32):
of the outcome of the biopsy and instead looking forward
to a really good sleep. While I was under an
ascetic it was so small that it burst before we
could take a photo. My specialist told me, standing at
the foot of my hospital bed, there should be nothing
(16:52):
to worry about. Thankfully this time there wasn't. It wasn't cancer.
My egg freezing journey could now begin again. So I
found myself in that pink consultation room very quickly after
that day and a little bit excited. We're finally going
(17:15):
to get the ball rolling. I said, there's a bit
of a concern about getting a hoist for the procedure.
My specialist said this procedure would occur at the same
hospital I had just had my polyp removed. They have
a hoist. I knew because I used it that day.
(17:38):
A polyp. It turned out wasn't the only thing to
put a pause on my plans. I and my eggs
were not only going to have to wait, but we
in fact were going to have to fight for our future.
(18:01):
Thank you for listening to Eggs, a limited series from
the creator of the I Can't Stand podcast. This series
was voiced, written, and produced by me Peter Hook. If
you've faced similar barriers with IVF, or you work in
(18:25):
the healthcare system and want to share your story about ableism,
I'd love to hear from you. Links in the episode
description and all stories can be shared anonymously. Just let
me know if that's your preference. Your support truly means
(18:47):
so much. Thank you for listening. Take care. I would
like to respectfully acknowledge they were wondery and bunner wrong
people of the Coulan Nation of which I record the
(19:07):
podcast to day, and I pay my respects to both
elders past and present, along with and especially to those
in the First Nation's communities who are disabled themselves
This limited series Eggs contains discussions of fertility, IVF and ableism.
(00:21):
When is the right time to freeze your eggs? I
know for many women they have this question of rolling
around on a loop in their heads. It is a
privileged question to be able to even ask ourselves, both
financially and scientifically. Between the period of twenty eleven and
(00:48):
twenty twenty one in Australia and New Zealand, the rate
of egg freezing and the demand for these services have
been said to have risen by one thousand, five hundred percent.
Was I going to be part of that statistic? The
first conversation I ever had about freezing my eggs was
(01:11):
with my mum. A small segment she had heard on
talkback radio had got the wheels rolling in her mind.
A presenter had mentioned a group of doctors on a
golf course. These doctors had decided to support their daughters
by helping them with the cost of freezing their eggs,
(01:34):
an additional birthday present, landing in their bank account on
their thirtieth birthdays. My mum has always been direct, never
wasting a minute of life. If something can be said
as clearly and matter of factly as possible. She was
(01:54):
the woman to do it. I think you should think
about freezing you around egg poss she said. My motto
in life is prior preparation prevents piss paul performance. However,
I felt hesitant about freezing my eggs. It was a
(02:16):
big step, particularly for someone who doesn't walk, to take.
If I chose to do this, it was the clearest
sign I could give to the world, but also to
myself that I back myself, that I believe in myself,
(02:37):
in my ability to be a mother, that I believed
in a future where it wouldn't just be me. My
instincts told me the medical system might not be ready
for someone like me, while also balancing the knowledge that
(02:57):
after everything, it still might not happen, they might not
get enough X. Before I go on, I want to
highlight how supportive my parents and my friends have been
in helping me decide if this new path I was
setting myself on was right. I didn't expect the response
(03:23):
that I received. I think after swimming in a soup
of life online as a disabled person and listening to
almost a hundred disabled stories on my own podcast, the
I Can't Stand Podcast, I had my walls up even
with people that I love. I will never forget the
(03:50):
flash of love, excitement, and pure life that danced across
their eyes as I told them thinking about freezing my eggs,
I was getting a small preview of the joy and
elation of what it would be like to tell the
(04:10):
people you love that you and your partner were pregnant.
The more people I told, the more I believed it
was the right decision for me. It felt logical, a
smart step. If I was privileged enough to be able
to do this, why wouldn't I choose to do it.
(04:34):
Freezing my eggs didn't guarantee motherhood. It didn't guarantee me
using them, or if I would have enough to fall pregnant.
But I had to try. I had to give myself
the option. My memory is often based on what I
(05:01):
was wearing and what other people were wearing on that day,
not a skill that is at all helpful, but I
have always been like this. My very first memory is
me being pushed into my very first operation at the
age of three. My pink nighty with the frill at
(05:24):
the bottom match perfectly with my dollies ninety bought specially
for the occasion. I remember the surgeon, saying that my
Dolly and I looked nice and she could stay with
me while I was asleep. Now, in October twenty twenty three,
(05:45):
I found myself with an IVF specialist appointment, and I
thought a lot about what I was going to wear.
I deliberately chose to wear my white broidery on glaze dress,
face of makeup, and bright pink lipstick. I wanted to
illustrate I was in control of my life, that I
(06:09):
was switched on, knowing exactly what I was doing, expecting
to be the very first woman this specialist had ever
seen with cerebral palsy. Look, everyone, I didn't spell my
coffee down my dress on the way here. I have
it together. Please let me freeze my eggs. I was
(06:32):
trying to sway opinion through a bit of manipulative marketing.
I went to the appointment alone. This was a strategic
choice too. I did not want anybody to think that
I expected anyone else to share the primary responsibility of
(06:53):
a child. As I arrived to the medical sweets, I
felt nervous. My anxiety was making me feel every heartbeat
in my chest. The sweet was small, cluttered with furniture.
The medical receptionist entering the phone at a desk that
(07:15):
was so high she didn't notice me. Chairs lined the
walls without a spare space, resulting in ME having to
awkwardly place my wheelchair in front of a chair. The
chair sat empty. Touches of pink felt like the phrase
(07:37):
that had been uttered by the interior designer. I imagined
it was a way to try and make the environment
feel less foreign to female patients, as if the color
pink was going to soften the news women would face
about their fertility in these rooms. My name was called
(07:58):
and I maneuvered into his I felt relief, belief because
I was finally taking control, doing the brave thing. The
specialist started talking and I instantly felt safe. He was warm, intelligent,
(08:18):
and friendly. This was a welcomed but unexpected outcome. I
had expected to have to explain myself my disability and
proved that I deserved to be there, but I didn't
need to. I relaxed. Maybe the world was catching up
(08:41):
and holding us to higher expectations. We talked through how
the IVF process worked. I told him about my period,
my cycle, and I mentioned that I couldn't transfer myself
out of my wheelchair and that I would need assistance,
preferably via hoist. In the medical system, it is something
(09:06):
called a patient lifter. He nodded and assured me we
would figure it out. He then handed me a ferral
for an internal ultrasound and blood tests that he needed
me to do before my next visit. When I endeavored
(09:27):
to find somewhere for the internal ultrasound, I began to
realize how far we have to go to achieve an
accessible system. I rang and emailed several locations trying to
find a place that I had a hoist that could
get me on to the bed to enable the procedure
to be done. I'm sorry, we can't help you. I'm sorry,
(09:52):
we can't help you. I am sorry, we can't help you.
I heard that sentence so many times. I ended up
going to a hospital for the internal ultrasound after all
my hard work success. A portable hoise was waiting for
me with a nurse to help I transfer, and five
(10:15):
minutes later, the sonographer pulled the screen towards me and
showed me my ovaries. Like all good medical professionals, she
didn't say much about how many follicles. I had. She
did mention if I were to get pregnant in the future,
I would need to go somewhere else that has a
(10:36):
hoist for my scans, as they were not able to
do those sort of ultrasounds. A problem for another day,
I thought to myself, after emptying my bladder into a bedpan,
A truly humble experience. The procedure was complete and I
was to wait for the results. On a bright November afternoon,
(11:03):
I received a call from my DW PEA. It seems
to show you have a good amount of follicles, she said.
Then there was a long pause. They have found a growth.
You'll need to get it removed. We can't tell without
a biopsy, but it might be cancer. I can't cope
(11:28):
with cancer, was my first thought. I'm not strong enough.
It would break me. As soon as the call was finished,
I wheeled myself quickly to my laundry. It has thicker walls,
meaning my neighbors would be less likely to hear me,
sob I needed a minute. I texted a few people
(11:54):
in my life to let them know canceled plans, and
sat in my house. I did start to feel thankful
for my non existent baby for helping me find this growth.
Knowing it would have remained hidden if I had not
made this choice to freeze my eggs. I was not
(12:18):
wearing a white dress on my next visit to the specialist.
I can't remember what I wore. My friendly, intelligent, warm
natured specialist evaporated some fears that Monday, peppering me with
statistics of how common this can be, how unlikely it
(12:38):
is that it was anything nasty. My egg freezing will
have to be put on pause, though better to be
safe than sorry. While I was awaiting my day of
(12:59):
surgery to get this growth removed, I thought I should
still push forward and get those original blood tests done.
I am also impossible to get blood out of This
is not related to my cerebral palsy. It's just dumb
luck my genetics. In the past, nurses had resorted to
(13:23):
pricking and squeezing the tips of my fingers to get
blood out of me. But the tests that I needed
this time was not just a vial With my referral
in hand. After fasting, I went to my local blood
collection service. A friendly woman greeted me and assured me
(13:43):
she was an absolute pro at getting blood. I rolled
up my sleeve and she tapped at my arm, willing
my veins to make themselves known. Have you drunk water?
She passes me a rubber glove full of hot water
and peers at my arm. After some time, she said,
(14:07):
I'm sorry, but you're going to have to go to
a hospital. There's no way I can get any blood
out of you. The blood still firmly in my veins.
I presented at a hospital's pathology department. They could fit
in this walking in her wheelchair. Even after using what's
(14:30):
called a butterfly needle, my blood refused to come to
the party. I'm sorry, You're going to have to present
to emergency and request an ultrasound machine. More ultrasound machines.
At least this time, I didn't need a hoist. As
the clock in the emergency department. Near towards midday, an
(14:54):
attractive mail doctor called me through. As soon as he
placed the old to sound on my arm, a big
vein showed itself to the camera. There you are, you
little bugger. Six vials of deep cherry blood filled each tube.
The doctor labeled them and then placed them to be
(15:17):
collected for reasons that are still unknown to me. Now,
I still had to get this blood test done two
more times. The second time they lost the whole sample
after the effort it takes to get blood drawn to
then lose it, and also had my DNA just out
(15:39):
in the world. Was very upsetting. So if I'm going
to meet a cloner myself in the future, I have
one bit of advice for those who use my blood
to make Peter two point zero, Please for her sake,
make her an easier bleed. It felt odd not to
(16:11):
be arriving at the Royal Chidren's Hospital as I had
done so many times before. Undergoing surgery for me is
like riding a bike. I have done it so many
times before. Little Peter did this without fear, so adult
me tried to do the same, trying not to think
(16:32):
of the outcome of the biopsy and instead looking forward
to a really good sleep. While I was under an
ascetic it was so small that it burst before we
could take a photo. My specialist told me, standing at
the foot of my hospital bed, there should be nothing
(16:52):
to worry about. Thankfully this time there wasn't. It wasn't cancer.
My egg freezing journey could now begin again. So I
found myself in that pink consultation room very quickly after
that day and a little bit excited. We're finally going
(17:15):
to get the ball rolling. I said, there's a bit
of a concern about getting a hoist for the procedure.
My specialist said this procedure would occur at the same
hospital I had just had my polyp removed. They have
a hoist. I knew because I used it that day.
(17:38):
A polyp. It turned out wasn't the only thing to
put a pause on my plans. I and my eggs
were not only going to have to wait, but we
in fact were going to have to fight for our future.
(18:01):
Thank you for listening to Eggs, a limited series from
the creator of the I Can't Stand podcast. This series
was voiced, written, and produced by me Peter Hook. If
you've faced similar barriers with IVF, or you work in
(18:25):
the healthcare system and want to share your story about ableism,
I'd love to hear from you. Links in the episode
description and all stories can be shared anonymously. Just let
me know if that's your preference. Your support truly means
(18:47):
so much. Thank you for listening. Take care. I would
like to respectfully acknowledge they were wondery and bunner wrong
people of the Coulan Nation of which I record the
(19:07):
podcast to day, and I pay my respects to both
elders past and present, along with and especially to those
in the First Nation's communities who are disabled themselves
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