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#disability advocacy APPARENTLY
soloh · 1 year
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My heart dropped into my stomach when I got the email saying the most recent finance test had been marked. It's the first assessment I've done in my finance course where we were only allowed one attempt, and I really struggled (I tend to finish tests early because I read fast- I very nearly ran out of time with this one just re-entering equations into my calculator to triple check them, or re-reading questions because I couldn't figure out which formula to use).
At first I read my score wrong and thought I'd got 24 points out of 100 and just about had a panic attack. But no, it was a score out of 24 points which was then converted into a percentage (out of 100 of course). My actual score was below that line of information.
I got a B-, which was also higher than the class average. I'm so freaking relieved. C's get degrees and I did 2 better than that 😅
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dromaeocore · 10 months
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For those of you who like the idea of peer respites, I just want to say these are not the only alternatives to the mainstream psych system :] Here's a big ol' list, and many/most of them are peer-run. I live in America, so a lot of this is US-based, but I've tried to make it as internationally accessible as possible!
I'll start with the live-in options. So ya'll already know about peer respites, if you read my latest post about it. There's a few more similar things out there.
Soteria Houses - More long-term (months+) community homes for folks with lived experience of psychosis/similar extreme states, with peer support, that focus on a humane and person-centered approach. Much more freedom & agency than your traditional group home.
Hurdalsjøen Recovery Center - a "medication-free" (aka medication-optional) psychiatric hospital in Norway. Allows patients to choose whether to stay on or taper/remain off psychiatric drugs. Focused on healthy eating, exercise, and recreational therapy options.
Bethel House - Similar to Soteria Houses, a homelike environment in Japan for people with schizophrenia, etc. that focuses on social reintegration.
Organizations, clubs, groups, etc:
Students With Psychosis - A peer support community with programming for students with psychosis
International Map of Hearing Voices/Intervoice networks - Non=pathological support groups for people who hear voices, see visions, etc. US directory, UK directory.
Clubhouse International - Gives people with mental illness opportunities for friendship, employment, housing, educational, and medical services all in one place. Founded by a group of friends who survived a psychiatric hospital together.
Project LETS - A radical approach to peer support and healing that has a disability justice centered approach, giving people with lived experience a voice and focusing on mutual aid. They provide peer mental health advocates, self-harm prevention, and more.
The Mad Society of Canada: A grassroots community of practice that brings together folks who want to provide non-coercive, ethical, survivor-informed mental health services/policy.
Power to the Plurals: Resources and events for people who identify as plural/multiple/systems.
The Wildflower Alliance: Grassroots peer support, training, and advocacy community based in Massachusetts.
Alternatives To Suicide (Alt2Su): Peer support groups that allow people to talk about suicidal thoughts without fear of being committed to the hospital, etc
Trainings:
Intentional Peer Support = Trauma-informed peer support training
Emotional CPR - Trauma-informed mental health support training program for the layperson
Hearing Voices Curriculum: Targeted towards mental health professionals to better understand the experience of hearing voices. Warning: It's expensive!
Cities that have a particularly awesome way of dealing with folks in crisis/with mental illness/etc:
Geel - a farming community where residents welcome people suffering with severe mental illness/distress into their homes and live with them, share work, etc (Edit: apparently Geel is a small city with like 40,000 people and not a farming community lol, I was misinformed. Thanks to @roxbot for the correction!)
Trieste - a city with a community centered system of care that integrates housing and peer support
Warmlines (generally run by peers) and Crisis Lines that don't call the cops: (Most of these are taken from this post by trans-axolotl on Crisis Lines)
Trans Lifeline: 877-565-8860, 24/7
BlackLine: 1 (800) 604-5841, has texting options
The Plural Warmline (No number, check the site)
THRIVE: text message line at 313-662-8209, 24/7
Promise Resource Network: (833) 390-7728, 24/7
Project Return Peer Support Network: (888) 448-9777 English or (888) 448-4055 Spanish, hours are Monday through Friday 2:30 PM to 10:00 PM PST and Saturday and Sunday 10:00 AM to 6:00 PM PST
Wildflower Alliance Peer Support Line: 888-407-4515, hours are 7pm to 9pm EST Monday through Thursday and 7pm-10pm EST Friday through Sunday
Key Consumer Organization: 800-933-5397, hours are 8am - 4:30pm EST, Monday - Friday.
MBRLC Peer Support Line:  877-733-7563, hours are 4 pm-7:45 pm EST every day. 
US Warmline Directory (unlikely to call cops, but check with the individual line first)
Misc:
CommonGround software - A software developed by Dr. Pat Deegan (an individual who was diagnosed with schizophrenia) that allows clients to communicate their needs to their doctors more efficiently to support shared-decision making with medication.
Open Dialogue- An psychosocial approach to psychiatric services that focuses shared decision-making and dialogue between client, providers, and family (if the client wants family involved), and often more minimal use of medication.
Integrative Psychiatry - A holistic form of psychiatry that focuses on nutrition, exercise, therapy, and psychosocial factors, where medication is just an aspect of treatment. US database of integrative psychiatrists here.
I will also give a somewhat honorable mention to Mobile Crisis Teams. They are a fairly new alternative to the usual "call the cops on your local mentally ill person". They are composed of nurses, therapists, social workers, occasionally peer support workers, etc. They hook the individual up with support/resources - which can often mean forced hospitalization/forced treatment FYI - but it is a step up from being killed by cops. Look up "[city] Mobile Crisis Team" to find out if there is one in your city.
A note: Something being on this list =/= it is perfect, just that it is an alternative to what we've got. So don't come at me, lmao. Feel free to add on if you know of anything else!
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ineffectualdemon · 9 months
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Also touching on the disability discourse because apparently it's that kind of day
Dividing the disabled community is bad
To be clear I am disabled. I have very limited mobility and severe pain, I use mobility devices, and I am also neurodivergent
Neurodivergent people aren't stealing access or resources from people with disabilities that affect their mobility. It's abled people who are not doing enough for those with mobility issues
And yes I am using mobility rather then physical disabilities because I see autism as a physical disability because it affects how you interact with the world physically
People who don't have sensory issues tend to dismiss them as not that bad. But I have chronic pain from arthritis and fibromyalgia that leaves me bed bound when I have a flare. Like my daily pain level is a 7.5
My joint pain is very bad
My pain when I am having a bad sensory day from my sensory issues is often at an 8. The pain is different but no less real and it's inescapable
I can take pain meds for my arthritis and fibro. I cannot take pain meds for when my environment is hurting me
My autism is no less disabling than my chronic pain
And people with autism and other neurodivergence should advocate for their accessibility needs
Just as much as there needs to be advocacy for mobility needs. There are plenty of places I cannot go because I use a walker and getting seating or accessible options is unnecessarily difficult and enraging
And the disabled community as a whole should fight for better accessibility for mobility and that includes ND folk speaking up for those with mobility needs
But dividing the community and blaming ND folk for the fact that some venues and businesses say "accessible for neurodivergent people" while no making it accessible for mobility is not useful
It's not ND folk who are making that policy. Target the abled people who are trying to take the "easy" way out
Accessibility for all disabled people
Don't let the abled divide us
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Hi, saw one of your reblogs about masking and wanted to ask something. Sorry if you're not the right person to ask, feel free to ignore, I just haven't got anyone irl that even cares anymore. I've been masking daily this entire time ever since the pandemic first started, but I'm beginning to wonder, when are we going to be able to stop masking? Is there anywhere you can recommend where I can inform myself about this, about what our outlook is like re: COVID and other safety precautions and that type of stuff? The government's position in my country is pretty much just "masks are no longer mandatory" (I wasn't even allowed to get a booster this year, they're apparently not recommended for under 60s here unless you're high risk), and there isn't a culture of masking when sick here, so almost no one does, not even doctors. And it's starting to affect me socially as well, you kind of end up socially excluded/ostracized quite a lot when most places you go you're the only one masking (which I realize is not as bad as death or long COVID but I do have to admit it's getting to me). I guess I'm just wondering if there's anything else to look forward to other than masking indefinitely?
I'm really sorry but unless and until there are widespread, systemic safety measures in place, as far as I know masking is gonna continue to be your best option in terms of protecting yourself and others from covid and its complications :(
There are less effective but still useful options, like the covixyl nasal spray and nasal sanitizers, and iota-carageenan nasal spray and/or cpc mouthwash as post exposure prophylaxis—but those are most effective when paired with masking.
If you do at any point decide to stop masking, altogether or in certain situations, I hope you'll consider using some of those preventative tools. They're dramatically better than no protection at all.
Air cleaners like the corsi-rosenthal box can help if you're in a space where you'd be allowed to set that up. Socializing outside helps a little esp if you're spaced out.
But unless systems get put in place to overhaul ventilation systems and quarantine sick people etc the most effective option I'm aware of as an individual is a well-fitting N95/kf94/kn95 mask with no gapping at the cheeks or anywhere else.
It might be worth finding out who in your area is organizing to try to demand or implement better covid safety measures, and see if you can join them. Try disability advocacy groups—even if they don't have a project like that in place they may either know who does or be willing to help you set one up.
Lastly, I'm just repeating info I've taken in (hopefully accurately) from medical journal articles. I'm just an ordinary person, I'm not an epidemiologist or virologist or medical expert of any kind, so please do your own research as well. Make sure any info you accept as for-sure accurate is from peer reviewed medical studies published by credible scientific journals.
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asaltysquid · 11 months
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I had a really interesting day today. These past few days have been particularly hard on me from just the stress of the news media and also the frustration of a bigot and eugenics apologist living below me and actively making the lives of the unhoused people in our neighborhood hell. Today was just one of those days where I was hit with existential dread of it all and fear of what the future will hold.
Normally on the way home from work I wear my earbuds and just focus on walking from the bus to my apartment. Now a block down from me that I walk past literally every single day is a house I always assumed was a neighborhood daycare center. Today for some reason I just didn't bother to put my earbuds in and walked past just as a man was gathering a group of elderly people and asked if I'd like to join a meeting for a disability advocacy group to discuss getting a bill providing more disability care through our province. Long story short and three hours later I had the pleasure of sitting and talking with some of the most intelligent lovely people. People who lived in my neighborhood. My community. What's more I found I had a lot to add to the conversation and provide. There's something healing about not only gathering to express rage at a broken system but to actively seek solutions and change. I don't know how many will realistically come to fruition but I sure can go to local businesses and ask them to hand out flyers as well as use my knowledge of media and marketing. I left feeling refreshed in a way I haven't in a long time. Sometimes you need to simply zoom out from the bigger picture and focus on your local community. I can't single handedly take down the government but I can possibly change my city.
If you're an anarchist/commie/socialist trapped in mental philosophical doom scrolling go and serve the people around you. We have to be the change we want.
(oh and one Elderly Lady asked me if I was apart of an underground graffiti society in the city and I thought that was very cool of her. She is apparently a member)
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dykesynthezoid · 8 months
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It just. Makes me so angry. That the concept of self-advocacy; something the disability rights movement pushed specifically to empower disabled people and allow them (especially those with intellectual/developmental disabilities) the right to self determination… but these days the only times you hear “self-advocacy” is when institutions are actively trying to make it more difficult for a disabled person to get accommodations. They’ll place hundreds of hurdles and hoops for you to jump through and call it self-advocacy. God forbid you’re deaf and they will only communicate with you through phone calls, or you’re adhd and they make you wait in a queue for 40 minutes every time you want to meet with someone, or you’re physically disabled and the disability resources building is across campus and uphill the entire way. None of this is actually set up for you to succeed. In fact you could argue the system has specifically been designed to stop you from getting help. And if you have the gall to be upset about that, well, apparently you just aren’t self-advocating hard enough
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communityinclusion · 4 months
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The Institute for Community Inclusion Mourns the Loss of Valued Staff Member Debra Hart
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Debra Hart smiling at a podium in front of a “Think Higher. Think College.” background.
With great sadness, we share with you the news that Debra Hart passed away unexpectedly on Tuesday, December 12.
Throughout her career, Debra was passionate about the full inclusion of people with disabilities in their community. She led the development of postsecondary education options for students with intellectual disability (ID) when many others could not envision such an approach. She was a relentless advocate for inclusion; she firmly believed that, given the right opportunities and supports, anyone who wanted to go to college could succeed. Debra's legacy includes much more than the many postsecondary education opportunities for students with ID that have developed across this country. Her legacy is also apparent in the striking number of leaders who have emerged in the field, and, most importantly, in the people who have had new opportunities because of the work she championed.
"I've had the honor of working alongside Debra at the ICI beginning with her early work in the area of transition. Debra was committed to seeing that young people with ID had the services and supports for a meaningful adult life. Her transition work evolved as she saw inclusive postsecondary education as a pathway to employment, social and emotional development, and independent living for young people with ID. Her impact both in Massachusetts and nationally are unparalleled. She was always dedicated to this work, even when others in the disability field did not share her passion or see her vision. The progress that has been made in this field is a testament to her work, as is the team she helped to develop at ICI and the many relationships and partnerships she developed along the way," said Cindy Thomas, director of the ICI.
Debra began working at the Institute for Community Inclusion (ICI) in 1989, where she led ICI's Education and Transition team. Over the course of her career, Debra's work addressed a range of disability issues from inclusive recreation, technology and innovation, and transition and postsecondary education. In the early 2000s, Debra spearheaded the inception of the Massachusetts Inclusive Concurrent Enrollment (MAICEI) program. Debra was influential in the creation of Think College, a national center that provides resources, technical assistance, and training related to college options for students with ID. Her visionary leadership transformed the educational landscape by providing inclusive opportunities for students with ID to access higher education.
Debra's leadership helped lay the foundation for one of the most significant benchmarks of progress in the field of inclusive postsecondary education: the establishment of program accreditation standards. Over the past decade, she collaborated with other national leaders to draft accreditation standards, create an accreditation process, and most recently, to establish the first and only accrediting agency for postsecondary education programs for students with ID. Debra was passionate about this work and knew the long-term implications of accreditation would set quality standards for the next generation of college students with ID.
Debra was also very proud of the work of Think College Policy Advocates, a program offering training to teams of college students with ID and college program staff on disability policy and advocacy. Supporting these individuals to use their voice to speak about important policy issues with their representatives in Washington DC was meaningful to Debra. She spoke about this experience often with colleagues across the country.
"Debra was at the center of the Think College team, and her passion and vision for our mission never wavered. She had a gift for bringing folks together and she led the way in making progress in the field of inclusive postsecondary education. For those of us who were lucky enough to call her a friend—and there are many—she gave us each many other gifts: her fierce loyalty, her love for travel and good food, her true compassion and concern for our lives and our families, including (or maybe, especially) our dogs. She had a tender heart, and you were lucky when she shared it with you," said Meg Grigal, her long-time friend and co-director at Think College.
The ICI extends our sincerest sympathies and condolences to Debra's family, friends, her colleagues across the country, and ICI staff. We mourn the loss of a leader, a colleague, and a friend.
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filthforfriends · 1 year
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Anons really want my take on Giorgia's ablism since I'm autistic myself. Fine, but remember that you don't get to argue with a disabled person's thoughts after asking their opinion on disability. Take it or leave, but don't leave it in my askbox.
I can only speak for the oppression of groups of which I am a part of. I'm feminist and autistic. So I poked around rancid-ass Twitter as requested by a few of you and found 7+ years old video of Giorgia with a past boyfriend. They're in bed, he's staring very hard at a pillow, and she says something to the effect of "you're acting so autistic with that pillow" and laughs.
If I want to extend my reach to all people with developmental disabilities, Giorgia responded poorly to the question "è vero che sei spresso in ritardo?" That roughly translates to "is it true that you are often late?" This interaction is also really old. Giorgia responds with a meme featuring a woman with Down Syndrome being kissed on the cheek by a man who appears to be NT. It reads "Io la amo lo stesso...anche se è sempre in ritardo" which roughly translates to "I love her the same...even if it's always late." This is a double entendre. The question employs the primary use of "ritardo" to mean delay/late/tardy. This is not offensive. The meme employs the secondary use, where "ritardo" refers to an assumed intellectual disability in a derogatory manner.
After scouring the internet, these are the only two instances I could find of Giorgia being ableist. It doesn't amount to much more than innate bias. As for her past anti-feminism, the woman has more than redeemed herself.
The vast majority of people bringing up her past ablism didn’t care about the oppression of disabled people until they could use it to discredit Giorgia. They’re creating a mirage of activism to usurp the suffering of disabled folks for their own gain. I know this because
1. They’re punishing a disabled person in the name of defending the disabled. 0/10 for comprehension. Giorgia IS disabled and she’s very open about it, but none of these apparently concerned allies acknowledge her disability because it’s invisible.
2. Despite receiving the most vicious hate on the internet, Giorgia continues to advocate for disabled people's healthcare. November 2021 she bore her fucking soul in an address to parliament as one of the most prominent members of the Vulvodynia and Pudendal Neuropathy Committee during their A Pain Without a Voice conference. May 2022 Giorgia gives another address at the Chamber of Deputies about two bills that the committee had since been presented to parliament which she helped write.
3. If you'd ever actually spoken to a disabled person about their oppression, you wouldn't waste your advocacy on this. A decade old meme with the r-slur doesn't even chart on Things That Ruin My Quality of Life.
So yeah, Giorgia's past transgressions are cancelled out by her creating actual legislature that makes all of Italy more accessible to disabled people. To this end, she has shared the most personal, dark details of her health because it might help another disabled person. All while battling depression and chronic pain as hoards of psychopathic 12 years wait to rip her heart from her chest in pieces because they feel some delusional ownership over her boyfriend. I don't envy her.
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PINNED POST!
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This is APPARENT ABSTRACTIONS, a project for various forms of art—mostly digital—including glitch art (databending, compression artifacting, ROM corruptions), pixel sorting, multimedia, and general abstract art. All pieces are numbered with no other titles, and released to the public domain for others to use as they see fit.
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Tumblr is nice because it lets me set up this tag browser, where you can not only view pieces by format but by color. There is also a DeviantArt, which is nice and clutter-free, and has the full resolution files available for viewing and download. You can find official merch, such as apparel and home goods, in this Society6 link, along with other stuff by the same artist.
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APPARENT ABSTRACTIONS is the project of Nick Shutter, a bisexual leftist who spends most of his time drawing furries, listening to dungeon synth, and playing weird little indie games. His real-world job is in the field of healthcare and involves disability advocacy.
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APPARENT ABSTRACTIONS and its artist will never mint NFTs, buy cryptocurrency, utilize AI trained on hard-working artists, use a delivery drone manned by an underpaid guy an ocean away, or engage in any of those other shitty ventures made by Silicon Valley startup pricks.
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Reproductive health and Reproductive Justice
A Brief History #6 During the 20th century it became socially apparent that a major factor contributing to poor health of women of colour were reproductive tract infections (RTFs) (Onwuachi-Saunders, 2019). To address this issue, Loretta J. Ross became a co-founder of an initiative known as The Women of Colour Reproductive Health Collective or SisterSong, along with Dazon Dixon Diallo (Onwuachi-Saunders, 2019). This initiative supported organizations that addressed issues vital to reproductive health (such as prevention, HIV/AIDS services, midwifery, substance abuse, human/health rights advocacy, self-help care, and reproductive rights) to identify concerns, treatments, and enhance the awareness of issues surrounding reproductive health of women of colour (Onwuachi-Saunders, 2019). At the core of these initiatives was an intersectional approach based on the factors of race, socioeconomic status, ethnicity, and gender to better understand what linked these issues to reproductive health (Onwuachi-Saunders, 2019). Forming Reproductive Justice
Spear-headed by women of colour, this initiative came to form conclusions that reproductive health is polarized between the 'prolife/prochoice' frameworks with a limited scope of all the issues that women of colour face (Onwuachi-Saunders, 2019). Thus, these movements argued that a holistic approach to women's reproductive health is the best way to meet all of their needs and is central to the health of marginalized communities who manage deeper political and social issues contributing to issues in reproductive health (Onwuachi-Saunders, 2019). In response, in 1994 The Women of African Descent for Reproductive Justice in Chicago recognized that reproductive rights movements led by middle class white women were not inclusive of low income, marginalized, and racialized minority women, so they coined the term Reproductive Justice to officially address these issues.
"Reproductive justice is defined as the complete physical, mental, spiritual, political, social and economic wellbeing of women and girls, based on the full achievement and protection of women’s human rights (Ross, 2007; Ross, Solinger, 2017, as cited in Onwuachi-Saunders, 2019)". The Movement of Reproductive Justice began with a published statement of 800 signatures in the Washington Post and Roll Call which was a catalyst for SingerSong (Onwuachi-Saunders, 2019). Current Movements
These grassroots organizations laid the foundation for the #MeToo movement (founded in 2006 by Tarana Burke) and the Women's March (founded in 2017 by Teresa Shook), both of which address different human rights issues such as sexual assault, gendered violence, reproductive rights, 2SLGBTQQIA+ rights, civil rights, civil rights, disability rights, immigrant rights, and environmental justice (Onwuachi-Saunders, 2019). However, these movements receive more media attention then the Reproductive Justice Movement which most appropriately addresses the impacts of race, culture, socioeconomic status which these current movements still perpetuate to some extent (Onwuachi-Saunders, 2019). As a result, unfortunately women of colour from low socioeconomic backgrounds remain neglected despite strong movements for reproductive health (Onwuachi-Saunders, 2019). Therefore, the demands of the Reproductive Justice Movement remain unmet which is exemplified through the racial bias and mistreatment within the medical system that Black and Indigenous women face in Canada and the US (Dayo et al., 2022).
References
Onwuachi-Saunders, C., Dang, Q. P., & Murray, J. (2019). Reproductive Rights, Reproductive Justice: Redefining Challenges to Create Optimal Health for All Women. Journal of Healthcare, Science and the Humanities, 9(1), 19-31. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9930478/
Dayo, E., Christy, K., & Habte, R. (2022). Health in colour: black women, racism, and maternal health. The Lancet Regional Health - Americas, 17, 100408. https://doi.org/10.1016/j.lana.2022.100408
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Worried I’m a bit in the weeds with this and as a human service worker for disabled ppl I need perspective, preferably from disabled/chronically ill folk.
a close friend of mine has had health complaints as long as I have known her. initially, it was an unconfirmed diagnosis of endometriosis. a constantly under diagnosed condition in AFAB people. affected her in a myriad of ways. despite constant complaints- to the point of it and her cats dominating our conversations like literally would just call to talk about her back pain and her cats playing and nothing else- and despite leaving multiple jobs while citing chronic pain as the reason, took her years to see a doctor. And then another year or so when the doctor blew her off like I warned her they would. which is discouraging, I know, but I gave her the statistics and discussed medical self advocacy in depth repeatedly every time she called to gripe and used shitty doctors as her reason for inaction. I actually ended up ghosting her for like a year because I couldn’t handle the constant calls that ignored the fact that I had a life and experiences of my own while repeating the same shit, often verbatim, and also overly in depth, overly explained.
We also talked about her mental health, coping with trauma, falling into and working on recovery from addiction from poor mental health. She booked what? One appointment? With the local sliding scale psych office where she said the meds made her nauseous then kept “forgetting to book again”
when she wormed her way back in, she was back at work and had finally, finally, pursued more medical attention. she’d had a colonoscopy and a gall bladder removal which apparently did nothing to help her issue but did exacerbate her IBS. and she’d apparently been fighting a constant battle against kidney stones that no one would do anything about apparently and it made her back pain worse… or caused it idk? for all the repetitive, drawn out, over explanations, I’m still not sure which. but she recently quit this job, which was night shift at a gym, complaining that they expected her to do more cleaning than day shift which exacerbated her pain. okay cool, desk job time right? She though so too until she decided that she misses bartending. And now she’s back to the calls. The long calls where she doesn’t even ask what I’m doing despite it being the middle of my fucking work day to tell me about how she’s gotta piss in a jug for testing. And how she’s gonna try to bartend again. Even though I pointed out that there’s a lot more on your feet and lifting heavy shit with bartending than the night shift gym gig where you had to greet 5 people, sweep up, then sit and read behind the counter for 8 hours. Also reminded her about the jobs that were sedentary that she had specifically asked me to look for. But more long winded explanations and yeah no she quit bartending bc of the pain but mostly bc of management.
Let’s not forget a few nights ago when I pointed out AGAIN that she was working herself up into anxiety and doing the anxious over explainer shit AGAIN and recommended therapy AFUCKINGGAIN and all the sudden her complaints about her mental health disappeared bc actually she likes her anxious thought processes and actually she thinks she’d more anxious if she could slow down her thoughts and aCtUaLlY she doesn’t want to heal up that anxiety
And the thing is that I believe her. She does experience chronic pain. She does deal with health concerns. Her mental health is subpar.
But I don’t know where the line is and I can’t keep having her ignore me as a person and use me as an endless dispenser of advice she refuses to take despite asking for it. I can’t be the ear that bends to all her complaints while she literally ignores what’s going on in my life. And I mean, I’ve dealt with chronic hip and knee pain for like a decade now, but I don’t call and wax poetic, I went to professionals until I got at least enough help to reduce flare up frequency and severity. I don’t use my cptsd, history of manic depression, and (now! because guess who actually did and is doing the therapy thing!) history of anxiety as an excuse. And even when I was in the throes of it, I didn’t wreck my life about it then use these issues as an excuse for it to those who loved me.
I can’t stay in this fucking cycle anymore because it sucks so bad to watch her take little steps forward then giant steps back. And it sucks even worse to have to do constant emotional labor about it.
And I know I’m pissed off and tired but what I need to know is am I being fucking ableist? Because I have dedicated my career to disability services and advocacy and I know it’s not the same when it’s personal like this, but I use what I’ve learned to try to help her but she seems to ignore it so she can call and tell me the exact same shit on a too-long phone call the next week
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millarlawfirm · 2 months
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March is Brain Injury Awareness Month. In Georgia alone, over 30,000 people sustain a Traumatic Brain Injury (TBI) each year, yet brain injury remains largely silent and unseen because its effects may not be immediately apparent.     
Visit sidebysideclubhouse.org to learn more, including ways you can help individuals affected by brain injuries, and their families.     
Side by Side Brain Injury Clubhouse is a 501(c)(3) non-profit organization whose mission is "to advance the long-term well-being of people with brain injury-related disabilities and their families through skills development, support, and advocacy." We thank them for all they do!
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Maybe a ridiculous thing to lose my mind over but I’m really tired of medication containers (and cleaners and such tbh) not being accessible it feels like a mix of disability erasure and assuming every adult has children (the pinnacle of existence after all /s) when in reality childless disabled people do in fact exist and sometimes need to access medicine & stuff while alone I know this is ridiculous I know I sound like an insane person losing it over childproof packaging but I will never shut up about it until there are options why are there not options why can I not opt for accessible packaging? Childproof packaging is fantastic in fact it should remain the default but could I also have the option please to access my own fucking medicine? I’m looking around my home wondering where are all these children that I am supposed to keep out of my medicine??? or who are these children that are going to break into my home and steal my medicine ??? I take child advocacy pretty seriously to a degree that is apparently considered radical to the mainstream (although I guess that’s not saying much much lol) but listen accessible medicine would be so far from the only dangerous thing in my home because not all spaces need to be childproof because not all spaces are for children and while I think the world does need more spaces for children and I will always fight for that, my house will not be one of those spaces because well I’m disabled and low-functioning but also its a small house and I don’t have children and I never will and I don’t have people over and if I did they would not be children. so why shouldn’t I be allowed accessible medicine containers
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charlenasaxen · 3 months
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Primates of Park Avenue - Favorite Quotes
“Or the strangeness of worlds within worlds like my college campus’s Greek system”
“He was born and raised here, a reality as exotic and appealing to me as, say, being from Tahiti”
“His was a cozy, ready-made family for me, with my own family so far away.”
“It marked a transition, I only realized later, my initiation into another world—the world of Manhattan motherhood”
“Outcasts in literature and the real world may be interesting, antiheroes we can root for, but they are usually miserable”
“And there is no one more at risk than a female primate transferring to a new troop with a neonate”
“or the ritualized bacchanalian rites of sorority rush at a Big Ten school—could rival it, or prepare me for it”
“helicopter rides to the Hamptons. There are “the right music classes” for two-year-olds, and tutors for three-year-olds to prep them for kindergarten entrance exams”
“There were obsessional quests for nearly-impossible-to-procure luxury items (like my own, once I had “gone native,” for a Birkin bag”
“insider trading” of information, such as how to hire a black-market Disney guide with a disability pass”
“could be ruthless in their advocacy for their offspring—and themselves. Sure, they are loving mommies, but they are also entrepreneurial dynasts”
“even to their best friends. But they all did it—finding the tutors through word of mouth, like insider trading”
“as many scheduled their children’s playdates with the “alpha offspring” of the rich and influential”
“a bid to move up the invisible but pervasive and powerful hierarchy that organizes life here”
“they turn to alcohol; prescription drugs; “flyaway parties” with girlfriends to Vegas, St. Barth’s, and Paris”
“In times of hardship they frequently bond with and look out for others in ways that are unexpected and extraordinary.”
“reminding me that even in apparently inhospitable, unfriendly climates, there is real warmth and kindness”
“to be healthy and happy, to feel loved, to thrive, and, one day, to make something of themselves”
“They are made. This is the story of how I was made, and remade”
“they looked at me as if I were excitedly divulging plans to join a cult”
“my husband choked on a cashew. There was no shortage of stereotypes about uptown versus downtown”
“After all, in New York City, town houses are a status symbol”
“on me, my husband, or Inga, who quickly became the third person in our marriage”
“there are essentially private clubs, run by boards of residents who make and enforce rules as they see fit”
“then the next day my husband, like all husbands, would come have a look”
“head back to the Important World of Men’s Work. Then he would call me and tell me what he thought”
“That’s why all the brokers and potential buyers were women. The men were there to provide gravitas”
“No, my kids go to Collegiate”—[Bam! Here she establishes superior rank”
“Here she reveals that she is a mere degree from TT school status herself”
“but apparently it meant a lot in our town. Many people who rent in Manhattan keep it a secret”
“when it’s easier to escape the noise by going outside or even to your country place”
“broker couldn’t be here,” Inga explained—I knew it was a diss of some sort in the world of brokers”
“And . . . I’ll look for you in Palm Beach. You’re going, right? We’ll be at The Breakers.”
“She said it so confidently, as if everybody saw everybody in Aspen”
“when incomes, investment portfolios, and egos were surging all over the city”
“Oh my God, I realized one afternoon. I totally forgot to apply to nursery school.”
“decidedly ungrandmotherly dowagers sporting massive diamonds”
“after a soignée older woman wearing the biggest bauble I’d ever seen stepped off one afternoon. “I think so,” he whispered back”
“snug, tidy Barbour jackets and precious, pristine pastries”
“little wool shorts and kneesocks”
“all made in Italy or France. Except the pajamas, which were always made in Portugal”
“in the future of a tiny powder blue cashmere sweater”
“with space you could previously only find in Westchester or Wyoming.”
“this was the terrifying predator to be outwitted and bested. It was our jaguar.”
“Up here on the Upper East Side, though, child’s play was apparently a deadly serious business”
“A few music class moms and my sister-in-law, an Upper East Side mother of four teens, were in charge of my education”
“you were supposed to do a certain baby group. Everything, it seemed, fed into everything else”
“hence they needed to be “older” once they started school. In the South, such “red-shirting” had begun so that boys would be bigger for sports teams”
“And they would prefer, say, an October birthday. Moms who became pregnant in January, February, or March won”
“Oh no, you didn’t even apply yet and he also has a bad birthday?” the moms I was getting to know exclaimed without fail”
“working assiduously on their behalf, is a vocation. Being a mommy here is a cutthroat, high-stakes career,”
“I was getting the hang of it. Or losing my perspective entirely. It depended on how you looked at it”
“you can consider the bridge to that school burned in perpetuity, and a friendship lost”
“reserved for people who stress two-year-olds and their hopeful, tense, and vulnerable mothers for no good reason.”
“It was not unusual to see a mommy crying on the street as she bundled her child up”
“holding my hand as we were about to enter yet another “playroom” full of kids he didn’t know, he looked up at me and said, “Mommy, I can’t do this,” and I wanted to weep.”
“We thought it best to let my husband, a calm and collected fellow, take our son to the audition at the fancy preschool his nieces and nephews had gone to.”
“You were, in their view, vetted, and a relatively safe bet. Even, apparently, if your son punched the boss lady”
“while I knew better than to talk about it much, for fear I would seem to be gloating, I was not above relishing the envious looks”
“there is no place more desperate, aggressive, dangerous, and inhospitable than the halls of an exclusive Manhattan private school”
“The moms air-kissing and hobnobbing and chitchatting and sometimes backstabbing”
“excitedly announced that he had been invited to a playdate by his friend Tessa—on her family’s private plane”
“when our son said we didn’t have one, and Tessa took pity on him and invited him to play on hers”
“one’s child’s friends and playmates can set your position in a hierarchy, bumping you up or dragging you down”
“He was polite, clever, and slightly rakish, unusual among the straitlaced Upper East Side finance guys”
“he and I chatted. Unbeknownst to me, I later learned, he was the scion of some sort of Manhattan banking empire”
“he suggested, in front of a group of moms, that our boys should play. “How about this Friday?”
“My son had a regular weekly playdate with the alpha’s son, which paved the way”
“When these people saw me engaged in friendly conversation with Alpha Dad in the hallway, they took note”
“By that time, though, my son had what he needed, which meant I did, too. Maybe this wasn’t going to be so hard after all.”
“proceeded to conduct himself as an indigenous Yemeni tribesman for the course of the evening (sabers were involved)”
“My final undoing was a powerful talismanic object—an Hermès Birkin bag.
“seemed to have a fantastic bag, and to revel in brushing her opponent with it. This was the coup de grace.”
“all along the uptown avenues of affluence there was plenty of road rage. With nothing but a plastic bag from the grocery store on my arm, I had been asking for it.”
“And then, Mike got himself a beautiful purse.”
“sent even Goliath, the reigning alpha male, into a cowering panic”
“given my budget, wanting a Birkin was about as reasonable as wanting to be the president of France”
“it had history, two handles, and a top you could choose to leave folded back and open or buckle closed.”
“What color is that?!” a friend who is an artist demanded of the startled owner of a fuchsia ostrich Birkin”
“Men could have their sports cars, their affairs, their fifteen-thousand-bottle wine cellars”
“The difficulty of this particular get, its near-impossibility, was part of the thing-in-itself, as intrinsic to the Birkin”
“He gets to prove how powerful and special he is—he got her this expensive, rare thing”
“You want it because it is somehow, vaguely, within reach—a stretch, but not utterly impossible. And because it is beautiful.”
“periodically reactivated by stress (such as a Birkin sighting) ”
“My friend Candace has bookmarked seventeen real estate sites in her quest, one she readily admits she will never really pursue, to move to Bronxville”
“and that I would be a very good customer”
“Even though Myra really thought this was a big mistake; I should get palladium, which, she explained, was seasonless”
“initially he thought I was talking about Birkenstocks. “I’m sure it really is a nice purse,” he began gamely, once I had explained that were talking about bags, not sandals”
“gave him a quick overview of the madness of the Birkinquest”
“how I knew, before the world economists knew it, that China had surpassed Japan to become the second-largest economy”
“Yes, the Birkin bag comes with its own raincoat. It was lighter than I imagined. It was beautiful and simple”
“Then I ran to the phone and ordered flowers, and a flowery thank-you note, for Myra. For all her help, and all her trouble.”
“I carried my Birkin everywhere, except in the rain. Then I had to leave it home, for fear of, well, of harming it”
“If you could get anyone at Hermès to sell you one. Which I doubt. But I didn’t say any such thing”
“contemplated how, on the Upper East Side, there are many, many ways to run a woman off the sidewalk.”
“teetered on stiletto heels and went to dinner parties and restaurants-of-the-moment and charity events until midnight”
“sometimes before you see a deer, you can hear it give a tremendous snort, a harrumph of disgust at your vile stench”
“so I called my husband instead.
“What?! We have to go!” he cried”
“slept better at night. Given all this, I became a proselytizer”
“the baby, who craned his neck from his stroller, mouth agape. He was hearing birds for the first time.”
“She and her peers dieted. After having babies, they survived on black coffee and Special K”
“Women came out in June, the second school let out, to set up house with the kids and the nanny. Husbands went back and forth on the weekends, but wives ran the show during the week.
“My identification with the tribe deepened with every exercise class and trip to the juice bar after”
“like stunning red male cardinals, or breathtaking male peacocks, feathers spread”
“I have been invited to a gathering of high-ranking females at the dwelling hut of a wealthy and powerful chieftain and his wife”
“coalitions via social inclusion, social exclusion, and gossip”
“In these contexts, self-presentation—including adornment of the body with particular textiles and of the face with specific pigments and enhancements—is of utmost importance”
“obliging my little son’s requests”
“at Michael’s—a midtown restaurant I thought of as the campfire”
“whose parents were fixtures on the social circuit a generation earlier, Candace viewed the world I studied with irony and humor,”
“I started to get a weekly blowout, upped my sunblock to tinted moisturizer, and added pinkish lip balm to the mix”
“that these women basically had several “uniforms” made the daily task of getting dressed a little easier. ”
“Skinny jeans and leather leggings were popular on casual days. On rainy days these were topped with classic trench coats”
“And on the coldest days, there were more furs—sumptuous beaver and glossy black sable and indescribably soft”
“the male club-winged manakin actually plays his wings like a violin.”
“easier to make beautiful music—but harder to fly. And escape predators. Meaning . . . male manakins are dying for beauty”
“he was a hedge fund guy and presumably, buying a building—the one he lived in—was something to do”
“apparently, Rebecca’s private aerie. There were light-colored flowers everywhere and a beautiful long beige marble table”
“My hostess gift—cookies I had baked with my son—had been eagerly and gratefully accepted by the hostess’s adorable twin sons”
“when there was very quiet talk, and lowered eyes, and obvious sadness and compassion about this woman’s previous miscarriages”
“placed discreetly in front of us by the staff—the talk turned to a West Coast interloper on the New York social scene”
“During “gala season,” from April through June, and then out in the Hamptons all summer long”
“All except the dinners, when husbands materialize”
“At one school gala’s live auction, it was said, the cookie jar made by the 4s went for sixty thousand dollars”
“Like the demurral of a compliment, the confirmation of the next meetup affirmed that they were one”
“Laden with lavender shopping bags for camouflage, I am on the hunt for The One”
“and I burst into tears.”
And: “My husband tapped me on the shoulder to ask me something and it startled me so badly”
“Robert Sapolsky, my partner in crime in the Bergdorf daydream”
“For the average mammal,” he explains, “stress is three minutes of terror on the savannah. After which the stress is over. Or you are.”
“little one adored the doting attentions of his older cousins and the songs”
“the physical thing that you talk and eat with and put makeup on”
“the best and safest car seat, stroller, and organic carrots”
“when she found the nanny’s notes, transcribed in broken, phonetic English and then painstakingly translated into Spanish, folded on the counter”
“Unbidden and uncompensated, this woman had gone to hours of trouble out of devotion”
“to find her charge, a baby. Breaking away from first responders who told her it was too dangerous”
“unharmed, but might not have remained so if not for her caretaker’s bravery and devotion”
“And for every plague, a drop of wine. Or a glass. Or a few.
Wealthy husbands on the Upper East Side collect red wine.”
“a juice fast to make up for the weekend of drinking and eating. Tuesday through Friday, drinking was on.”
“I turned to her and suggested, with great authority and no self-consciousness, “That’s because you have to take it with a Bloody Mary!” We had never seen each other before, let alone spoken.”
“It meant that we could lose them. It was the ghost at the heart”
“the baroque, bizarre flora and fauna that spring from a terrain of damp, fertile panic. Please, I thought, another drop of wine”
“that I wanted to name her Daphne. How could I not submit to her, this baby who so wanted to be born? How could I not give her a name?”
“into the rain toward the waiting black town car”
“as did I. Then I crawled into the car and lay down across the backseat with my head on my husband’s lap”
“and I was wondering, How did I get up here, and who is that woman down there who looks so upset?”
“he told me he liked my shoes. I told him that they were called skimmers, and that they were for the rain, and that girls have all the fun.”
“the photo of my two young sons I had taped up next to my bed—my older son laughing”
“But I must have been screaming instead of talking, because the doctor beside him said, “Oh my God,” very softly and put her face in her hands”
“my husband’s eyes were closed, and he kept them that way for a long time as I stared at him.”
“he grimaced and closed his eyes for a moment, and then he opened them and said, “Because I know. I just know it’s not your fault.”
“Something had pierced his expression, it seemed, as he said it—he was suddenly a person talking to another person, trying to coax her back into the world.”
“kept telling her, in my head and aloud, that I was sorry, and that it wouldn’t be long now. ”
“We’ve had some good times,” something I always say to him when something terrible is happening, and he smiled”
“from us to all our closest friends, to all their friends and then to every single woman and man with a preschooler in Manhattan”
“No. How did this happen? It can’t be. What happened, exactly? Why? What will her mother do?”
“Her hair was wispy and blond and her eyes were huge and blue. She loved cooking and school and ballet.
“One night, about week before she collapsed, she and her big sister came to our house to play with my sons”
“there was a tiny knock on my door, and there was Flora, with a gift wrapped in white tissue paper and a gold bow. This is for you, she said shyly, smiling”
“she made a choking noise and said, “She was getting so brave. She was doing more things like that.”
“She will not wear that tiny sweater with yellow flowers on it again, or those pink rain boots. Her small cubby at school”
“I suspected Lily did, too. There was no comparing the loss of a toddler, a little person you had known and loved”
“I’m glad you’re my baby sister, even though you died, he wrote to Daphne. I miss you”
“please be in touch if you can, the one to Flora ended”
“unexpectedly, the mothers, many of whom I had dismissed as unfriendly, self-involved, and shallow, showed me what they were made of,”
“or take him to the movies. They sent over dinner. And when people invited us away for the weekend, we went”
“did not give up on me. Some of the very ones who had hazed and harassed me came over for a glass of wine”
“to care. For weeks and months and in some cases, for years.”
“function in part as emotional support and in part as surrogate child care. They did not give up on me, because they couldn’t.”
“But nor had I ever felt more cared for and tended to, more truly befriended”
“And then, they simply continued to be kind. “How did we become friends again? I’m so glad we did . . . I guess it was school?”
“under dire circumstances I would likely see a better, deeper part of her, and she would see the same in me”
“chimps consoling conspecifics who are upset by hugging and kissing them”
“will voluntarily open a door to offer a companion access to food, even if they lose part of it in the process.” Capuchin monkeys will seek rewards for others, coming to prefer, when offered two different tokens, the “pro-social” one”
“a female named Daisy who loved wood shavings hoarded hers—in order to bestow the entire cache upon a sick male named Amos, so he could make the nest where he rested more comfortable”
“essentially plumping the pillows of the hospital bed of someone she cared for, knowing it would feel good”
“In other words, caring is our first impulse; only our minds stand in the way of doing so every time.”
“The sun was sinking lower in the bright blue sky and I felt a strong, slow swell of happiness as our family drove home with the windows rolled down, taking in the beautiful afternoon”
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mariacallous · 9 months
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Despite our significant progress in making healthcare services more equitable to all populations, older people and those residing in nursing homes and long-term care facilities are often overlooked in mainstream discussions about healthcare equity.  
One of the reasons contributing to their exclusion from these discussions is the current funding structure for their care. While Medicare provides reasonable reimbursement, its duration falls short, placing the major financial burden on Medicaid, which offers comparatively limited payment. Consequently, apart from a few fortunate individuals who can afford private care, most older adults have no viable alternatives. The demographic distribution within U.S. nursing homes does not mirror the overall population composition in the country, illustrating the manifestation of this effect. Research conducted by Feng et al. highlighted that from 1999 to 2008, the population of elderly Hispanics, Asians, and African Americans in nursing homes saw an increase of 54.9%, 54.1%, and 10.8%, respectively. On the other hand, the count of Caucasian senior citizens residing in these institutions dropped by 10.2% within the same timeframe. The data shows that the growth rate of minority residents in nursing homes outpaced the growth of the minority population in general, even in regions with a significant minority presence. This might suggest that minorities have unequal access to preferred alternatives for long-term care, such as home and community-based services.  
Under the Older Americans Act, every state administers a Long-Term Care Ombudsman Program (LTCOP) to aid residents and improve long-term care systems. Likewise, Protection and Advocacy (P&A) programs exist nationwide to uphold the rights of individuals with disabilities, providing advocacy and legal support, and functioning independently of service providers. Even with these programs in place, when we consider the challenges associated with aging, such as lack of personal advocacy, limited mobility, and cognitive decline, it becomes apparent that this demographic genuinely requires more robust representation. 
For example, the long-term care facilities were largely left out of the digital transformation efforts initiated by the Health Information Technology for Economic and Clinical Health (HITECH) Act. These facilities did not qualify for the meaningful use incentives, which could provide eligible healthcare professionals with up to $44,000 for adopting and utilizing electronic health record systems. As a result, this segment has significantly lagged in the digitization of the healthcare industry and missed the associated benefits. This oversight has far-reaching indirect impacts on various aspects that influence the patients’ quality of life. An illustrative example is the high turnover rate in the industry, which is exceeding 100% annually.  In 2017 and 2018, Registered Nurses (RNs) experienced the highest average turnover, with a rate of 140.7%. Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs) also saw notable turnover rates at 114.1% and 129.1% respectively, though they were lower. Considering the severe toll of the COVID-19 pandemic on both residents and staff of nursing homes, we anticipate that the turnover rates will significantly increase in the post-pandemic period. 
Surprisingly, a recent study by my colleagues and I has shown that factors like pay are not the primary drivers of turnover. Rather, aspects such as scheduling flexibility and improved supervision carry greater importance. Empirical research indicates that scheduling software can play a vital role in reducing turnover rates. Yet implementation of such software would face significant challenges given that long term care facilities have been left behind in our national digitization efforts.
Another example is the Nursing Home Compare. This is a 5-star rating system like that used in the hotel industry and is administered by the Centers for Medicare & Medicaid Services (CMS). Owing to the scarcity of alternative sources of information on the quality of nursing homes, the CMS system has risen to be the industry’s gold standard. It is extensively utilized by patients, medical providers, and payers to evaluate the quality of long-term care facilities. The ratings assigned to these facilities suffer due to the lack of digitization, relying heavily on self-reported quality measures. The research by my colleagues and I reveals a prevalence of exaggerations, rendering these ratings unreliable. Both the issues of staff turnover and inaccurate ratings have a significant impact on the residents’ quality of life. 
As the American population continues to age and live longer, the financial challenges faced by this segment will only intensify. To address these pressing concerns, it is imperative that we explore innovative approaches, leveraging technology to fundamentally transform the way we deliver care to this population. The possibilities are limitless. For instance, technology can allow older individuals to remain in their own homes for extended periods by utilizing Internet-of-Things (IoT) devices to monitor and manage their well-being.  
The role of artificial intelligence (AI)
Artificial intelligence (AI) can be leveraged to improve communication between medical teams, patients, and their families, and caregivers. Language models can effectively convey complex medical messages in easily understandable terms with a compassionate tone, potentially increasing patient adherence to medical advice. This becomes increasingly important given the low levels of trust in the medical community reported by the public. AI could help bridge the trust gap between patients and doctors. 
Another crucial application of AI is managing the overall well-being of patients, which extends beyond medical care. For example, AI can assist with routine financial tasks such as automatic bill payments, expense management, and personalized recommendations, which can greatly benefit older adults, especially those with Alzheimer’s. These tasks may be simple for younger individuals but can pose significant challenges for older adults. By addressing these challenges, AI has the potential to drastically enhance their quality of life. Additionally, we can explore AI-driven virtual companionship through chats or phone calls.  
While recognizing these advantages, it’s important to be aware of the potential harm that modern AI could cause to older adults, particularly considering its novelty and our limited understanding of their full impact. For instance, such systems could result in serious privacy violations, potentially with repercussions exceeding those we’re familiar with in our existing systems. Thorough testing should be conducted prior to the broad implementation of such technologies.  
It is imperative to consider modern methods of financing these services, keeping in mind that with scalability, the costs can be kept modest, allowing larger providers to cover them through subscription models.  
It should be noted that AI-based technologies derive significant advantages from scalability. With a larger user base, they gain access to more extensive datasets, enabling them to learn and enhance the quality of their services. This larger user pool also allows AI developers to offer their services at a substantially lower cost per user, as the true cost of providing these technologies does not increase with the number of users. This unique combination of improved quality and affordability empowers residents and their families to afford these services independently, without significant government support. 
This approach would enable hospitals to concentrate on delivering advanced medical services, while nursing homes can focus on providing intensive care to a select few individuals requiring it. Simultaneously, the government’s current resources, typically allocated for routine nursing home services, could be redirected towards addressing the more urgent needs of patients requiring higher levels of care. 
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sbreakstoneautadvo · 1 year
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