Thank you for this series, Kelly. Will you be exploring the legal aspects of this?
I agree - "It all boils down to a lack of recognizing the basic of the humanity (and therefore inherent, inarguable possession of dignity) of disabled people. Until a broader range of society conceives of disabled people as human beings, we will be endlessly disrespected." what complaints and action are possible as a patient, and as a disabled person in the US? (recognising the current political environment, etc).
Personhood, a person's rights, and how those rights are enforced are subjects I explored early in caregiving - in terms of advocating for my parents and for myself, as their full-time carer, in acute situations and generally.
I was familiar with discrimination and rights in the workplace but curiously sought more information. The question I had in mind was - "While I was protecting and preserving my father's dignity, who would have my back?"
- How organisations like Carers UK are campaigning for caring to be named the 10th Protected characteristic
And from personal experience - In an ER or general everyday situation, it's mainly on the carer to assert their rights - not easy in an overburdened hospital when you're stressed advocating for the needs of someone else who has disabilities (Dad had RA, gnarled hands and mobility issues). There are policies and 'should happen' statements, but the default assumption is that the carer is there to do the caring, and is the responsible post-discharge.
I hope those comments offer insights into carer-personhood, rights, and the UK context.
Thanks for the thoughts and information, Victoria! As far as complaints and actions that disabled people (or their allies) can take in the U.S. it depends on the issue and the locality. Filing a complaint with the appropriate office or oversight, is just a good practice but not always practical (shortage of time and energy is huge here). There are state based advocacy groups to engage and that is great to do, but also dependent on time and energy. In my case, health care discrimination is technically illegal but hard to catch and the undercurrent of ableism throughout society makes it extremely difficult to combat. I think individual conversations with providers (if possible) is the most direct answer, with the option to elevate to management. I'll be honest, I was too busy doing my rehab and recovery to complain about what happened and by the time I had capacity in my life it was way too late. This is why I think discrimination in health care is so pernicious--we don't have the capacity to complain aggressively at the time of care when we are unwell and struggling. Having my husband and other family with me to advocate has always been the best answer in the moment.
Thanks, for sharing Kelly. Please know that I wasn't suggesting you needed to complain about how you were treated. I concur with what you've said. I didn't complain about a specific situation for the same reasons. I chose not to, to preserve my energy and time caring for my parent at the time. I did share my learnings with other Carers and relevant organisations to raise awareness.
Pernicious is a good word.
I've camped out a couple of times in the hospital, as the carer & advocate, I've learnt not to care about being a pain but it's been an evolution through a lot of painful situations.
Thanks for this incredible newsletter.
I love this line:
“Ultimately, I believe that dignity is not something that others can bestow — it is just inherent in our being, waiting to be honored and recognized.”
I am going to share your newsletters with others. Everyone should read it.
Thanks Mike! Appreciate the support!
Thank you for this series, Kelly. Will you be exploring the legal aspects of this?
I agree - "It all boils down to a lack of recognizing the basic of the humanity (and therefore inherent, inarguable possession of dignity) of disabled people. Until a broader range of society conceives of disabled people as human beings, we will be endlessly disrespected." what complaints and action are possible as a patient, and as a disabled person in the US? (recognising the current political environment, etc).
Personhood, a person's rights, and how those rights are enforced are subjects I explored early in caregiving - in terms of advocating for my parents and for myself, as their full-time carer, in acute situations and generally.
I was familiar with discrimination and rights in the workplace but curiously sought more information. The question I had in mind was - "While I was protecting and preserving my father's dignity, who would have my back?"
Here in the UK, I learnt about:
- the 2010 Equality Act and the 9 Protected Characteristics: https://www.equalityhumanrights.com/equality/equality-act-2010/protected-characteristics
- Carers Rights: https://www.mobiliseonline.co.uk/carers-rights
- How organisations like Carers UK are campaigning for caring to be named the 10th Protected characteristic
And from personal experience - In an ER or general everyday situation, it's mainly on the carer to assert their rights - not easy in an overburdened hospital when you're stressed advocating for the needs of someone else who has disabilities (Dad had RA, gnarled hands and mobility issues). There are policies and 'should happen' statements, but the default assumption is that the carer is there to do the caring, and is the responsible post-discharge.
I hope those comments offer insights into carer-personhood, rights, and the UK context.
Thanks for the thoughts and information, Victoria! As far as complaints and actions that disabled people (or their allies) can take in the U.S. it depends on the issue and the locality. Filing a complaint with the appropriate office or oversight, is just a good practice but not always practical (shortage of time and energy is huge here). There are state based advocacy groups to engage and that is great to do, but also dependent on time and energy. In my case, health care discrimination is technically illegal but hard to catch and the undercurrent of ableism throughout society makes it extremely difficult to combat. I think individual conversations with providers (if possible) is the most direct answer, with the option to elevate to management. I'll be honest, I was too busy doing my rehab and recovery to complain about what happened and by the time I had capacity in my life it was way too late. This is why I think discrimination in health care is so pernicious--we don't have the capacity to complain aggressively at the time of care when we are unwell and struggling. Having my husband and other family with me to advocate has always been the best answer in the moment.
Thanks, for sharing Kelly. Please know that I wasn't suggesting you needed to complain about how you were treated. I concur with what you've said. I didn't complain about a specific situation for the same reasons. I chose not to, to preserve my energy and time caring for my parent at the time. I did share my learnings with other Carers and relevant organisations to raise awareness.
Pernicious is a good word.
I've camped out a couple of times in the hospital, as the carer & advocate, I've learnt not to care about being a pain but it's been an evolution through a lot of painful situations.
Yes! It take gumption to be a persistent advocate, but it is important (yet unpaid) work that we do to take care of both ourselves and our loved ones!