So unless you’re prepared to support me, fill out inaccessible paperwork, come to meetings, gather the evidence to assert my rights, do the labour of educating healthcare professionals & protect me from further abuse or discrimination, don’t tell me “you should complain”. /14
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The nurse gave me further information on the next steps of the test. I nodded, said “yes” & “I understand”.
As I exited the room & Other Half came forwards, the nurse repeated all the instructions to OH. Loudly telling him how to look after “his wife”.
We’re not married 4/
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What was so frustrating about the experience was that by making Other Half leave the nurse created access barriers.
He could have read for me & supported me with the drink.
OH is even down as my carer on the maternity forms 5/
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The sad thing is in all my maternity care so far this is the first time I’ve encouraged ableism.
The midwives are great, my blindness doesn’t phase them at all & we’re planning how to meet my sensory & access needs in labour.
Nurses clearly need disability awareness training 6/
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What I want non disabled people to understand is how utterly normal this experience felt.
As a blind person I’m usually manhandled, patronised & denied access support by medical professionals.
I probably will complain but honestly I expect the same experience next time. 7/
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So if you’re a healthcare professional reflect on your awareness around blindness & visual impairment.
If you lack knowledge or confidence to provide care & support then educate yourself.
There are so many excellent resources provided by organisations like
@RNIB
&
@guidedogs
8/
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And if you don’t have the time to follow blind advocates, watch a video or read a blog.
Just reflect on how it might feel to have a medicated drink shoved into your mouth. Or to be talked to like a child.
I’m blind & I am still a person. Treat me with dignity, care & respect 9/
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I want people to understand why “make a complaint” isn’t necessarily an accessible, safe or easy experience for a disabled person.
First, it won’t be anonymous, how many blind pregnant people with guide dogs in their third trimester are interacting with the department? 10/
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So healthcare staff will know that I have complained. The same staff who in 12 weeks will get decisions over my care & support in labour.
And no it’s not an unrealistic leap from forcefully shoving a drink in someone’s mouth to denying them pain relief. 11/
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Also I don’t trust the complaint process to be accessible, even down to my assistive tech accessing the website or are there large print paper forms?
It will also require administrative & emotional labour I don’t know that I have the resilience or capacity for. /12
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Also as anyone who has interacted with the NHS recently regarding pregnancy care knows… this might not be the biggest battle.
What do I put my energy towards? What if this complaint process takes my time away from asserting my access needs in my birth plan? 13/
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Also telling a disabled person who has experienced discrimination & traumatic assault that it’s their job to educate the person who victimised them is horrific.
You’ve read this thread, step up & do some educating about disability in your workplaces, families & communities. /15
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Thank you for all the kind replies 🥰
Normally I share my details as a disability advocate but I’ll be stopping work soon for Baby!
If anyone can send some support to me as a soon to be disabled parent I would be incredibly grateful. Thank you /16
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Alternatively you can donate to
@guidedogs
who have provided me with so much support including my beautiful Guide Dog Ava.
Ava has given me the independence & confidence to become a parent.
Sponsor a guide dog puppy here! 🦮⬇️
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If you want to learn how to assist a blind or visually impaired person then I highly recommend
@guidedogs
sighted guiding training course.
It’s free, online & open to anyone who wants to learn how to confidently & respectfully offer support.
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@BlondeHistorian
You need to file a complaint with either your state insurance commissioner or CMS.
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@BlondeHistorian
The complaint also follows you throughout your care, for all your future hospital visits. So unfortunately it's not always worth it. Why on earth not let your partner stay. Make their life easier too. So sorry you had this experience.
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@BlondeHistorian
What an awful experience you had, thank you for sharing. I sincerely hope that next time the staff caring for you are more sensitive. Really I don't know what to say, shameful 😞. Wishing you well for the rest of your pregnancy
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@BlondeHistorian
If you do choose to put in a complaint, it’s usually via email to PALS. Unfortunately from my experience it doesn’t seem to to far, though.
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@BlondeHistorian
I am so sorry you've been treated this way when you should be able to enjoy your pregnancy and feel confident that you will get the care and support you need. Sending love and goodness
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@BlondeHistorian
Your experience was beyond dreadful, and I don’t want to depress you further but when you have a lifelong disability and turn 70, much of the NHS belittles and infantilises you despite your history
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@BlondeHistorian
Was about to tell you it would be my honor to accompany you anywhere in this healthcare journey and support you. Would that I were somewhere near you. At the least I can listen.
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@BlondeHistorian
Please complain - I am an nhs complaints manager - there should be no forms and they must legally offer you the details of advocacy services
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@BlondeHistorian
Complaining doesn't have to be adversarial. You are equating the two, & becoming fearful. Abusers play on fear. You aren't a victim! You're disabled and deserving of respect. Don't enable them; if they "abuse" you, squeal - loudly! Or pull away, "startled." You are strong. 💖🫂😘
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@BlondeHistorian
Is their any organization that will stand up for you and other disabled person. You would think that we as a people would have something or someone who could step in and make sure your complaint’s don’t take away from your medical needs.
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@BlondeHistorian
I used to work in a hospital. I understand you not wanting to complain, but if you did... You should make it a public complaint on Google for them or something similar. They react VERY seriously to those and would likely comp your visit. I get it if you don't though ❤️
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@BlondeHistorian
This is what I routinely did as a doula: Advocate for the parent’s wishes and support them with the proper resources and channels to meet their needs.
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@BlondeHistorian
I am so sorry to hear this. I have been a patient advocate for friends and family - both disabled and elderly. And I have been on the receiving end of discrimination and poor health care and understand the emotional labor and risks involved in making complaints.
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