poor memory is a huge deal and i wish people wouldn't diminish it by saying "oh yeah i can't remember what i had for breakfast lol."
i can't remember the first 10 years of my life. i can't remember entire days, weeks, months at a time. i can't remember entire people, i can't remember names or faces. i can't remember when things are scheduled for, my calendar app on my phone is booked to the max with reminders and task checklists. i can't remember when i moved into what home when, i can't remember important milestone dates like when i got or lost certain jobs, or when i started a new hobby.
that's what i mean when i say i have poor memory. poor memory is so scary for the person who has it. it's not a quirky thing, everyone forgets small details. memory problems are scary because you can go through entire events or days with no memory, or plan for things in the future that you can't recall ever even looking into or scheduling. it's not a funny haha kind of thing, it's serious, and it affects a lot of people in very unavoidable ways.
not being able to plan for appointments or work schedules, not being able to remember people's names or faces, not being able to recall whether or not you were present for something or whether or not you met someone, not being able to keep track of what's happening on what dates and losing track of items because you can't remember where you put them are all very real problems, and anyone dealing with them deserves to be taken seriously, and not diminished when they choose to speak up about it.
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if you are a disabled person of any severity and can make it through a grocery shopping trip, i am proud of you and look up to you. if you can't make it through a grocery shopping trip for whatever reason, pain, anxiety, psychosis, ADHD, autism, depression, memory or attention issues, fatigue, exhaustion, irritability, confusion, dissociation, or anything else, you have my condolences because i'm right there with you, that shit sucks ass. it's needlessly complicated and its something that abled people take for granted
of course disabled people cant go across the entire store to put an item back every time. of course disabled people may need help getting items from high or low places. of course disabled people will get lost even in labeled places because of object blindness, blindness/eye problems, bad attention span, anxiety, or other issues, of course there are who can't make it through the entire store without collapsing
these stores are designed to confuse customers and trap them inside for as long as possible to increase impulse spending, of course disabled people are going to struggle to navigate the store. i love you if you're disabled and can navigate the store, kudos to you, but i also love you if you can't. it's not easy and people take for granted how easy it is for them when others can't do it at all
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Neurodivergent reminder: Overstimulation feels a lot like anxiety, and understimulation feels a lot like depression.
More importantly, you don't need to know which it is to practice self-care.
Self-caring anxiety and overstimulation looks the same:
Recognize you're feeling big feelings
Take as many deep breaths as your need to slow your mind
Identify what’s causing the feeling, whether sensory, environmental, or situational
Minimize that cause as much as possible immediately
Self-caring depression and understimulation looks the same:
Recognize you’re in need of stimulation
Turn on an interesting long-form video of some kind
Do some quick exercise like a walk or jumping jacks
Call a friend that'll let you infodump
If you're neurodivergent and easily get stuck on labelling things — I see you.
I'm here to remind you that you don't need to know what it is to take care of it in the meantime.
You can — will — figure it out later.
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Life is hard for neurodivergent people in Peru. Now a grassroots uprising of people with bipolar disorder, ADHD and autism – organised through picnics in the park – is pushing for change at the heart of government.
On a bright summer afternoon in Lima, the capital of Peru, Carolina Díaz Pimentel takes some red and green tape out of her backpack. She’s in a park waiting for people to arrive at a picnic she and her friends are hosting. Guests know that they don’t have to be on time, don’t have to make eye contact, and can leave at any time if they feel overwhelmed. No one will question them.
“We want everyone to feel comfortable. At least this afternoon we want to take a break from the rules that are imposed on neurodivergent people every day to fit in,” says Díaz Pimentel, a journalist and a co-founder of the Peruvian Neurodivergent Coalition (CNP), who is herself autistic and has been diagnosed with bipolar disorder.
Hence the coloured tapes. Each attendee will choose one to express their “social battery”. If they choose the green tape, it’s because they want to participate in the activities. Red signals they prefer not to be approached. Everyone wants company, that’s why they are here, but in different ways. And that’s OK. People start to arrive. Several choose red.
CNP is a social initiative that first kicked off in March 2023. It is the alliance of five neurodivergent women who were already making waves by posting openly about their conditions on social media, but who longed to make real-world change. “I used to see this kind of gathering in countries like Mexico and Argentina and was sad to be so far away, until I saw the announcement of a picnic in Peru. Before joining the coalition, I didn’t really relate to anyone. I had good friends, people that care about me, but I knew I wasn’t like them,” says Mayra Orellano, another of the directors, an interior designer with borderline personality disorder (BPD).
Today [in March 2024] is the coalition’s fifth gathering. A picnic may not sound like fertile ground for a burgeoning social movement, but behind the bags of cookies and crisps, that is what CNP is doing – campaigning for the rights of neurodivergent Peruvians to be understood and accepted, and to live free from stigma and abuse.
The birth of the neurodiversity movement
The concept of neurodiversity has been around for almost 30 years after first being coined in 1997 in an undergraduate thesis by Judy Singer. Singer, an Australian who is now an eminent sociologist, argued that conditions such as autism, dyslexia and Attention Deficit Hyperactivity Disorder (ADHD) are all simply part of the myriad ways in which human brains are wired. It proposed a new way to think about human difference and provided a name for a burgeoning movement. In Peru, however, it remains a concept that few have heard of.
“Neurodiversity is not a medical diagnosis, it’s a political movement that brings us together to defend our rights,” says Díaz Pimentel. When she first started posting about her bipolar disorder on social media in 2017, it was taboo: very few talked about their diagnosis in public. Bipolar disorder remains a stigmatised condition in Peru...
Diaz Pimentel’s commitment is stronger than prejudice, she says. Two years ago, when she received her autism diagnosis, she posted a photo of herself holding a rainbow cake with the words ‘Congrats on the autism’ spelled out in white icing. She wanted to celebrate with her community because she considered it a rebirth: at the age of 29, some of the puzzles of her childhood finally made sense...
From picnics to influencing policy
Neurodivergence is a huge umbrella that describes people with very different conditions. In Peru, this causes confusion and a lack of accurate data. Even in the case of autism, the best recognised of the neurodivergent conditions, the National Registry of Citizens with Disabilities lists some 15,000 people on the spectrum. But according to international statistics on the worldwide prevalence of autism, there are likely more than 200,000 people with the condition in the country.
María Coronel, the psychologist in charge of the ministry of health’s child and adolescent mental health department, says that clarifying this data is one of the institution’s priorities. She acknowledges that initiatives such as CNP’s can help educate people: “These organisations add to our efforts to detect people on the autistic spectrum and give them the help they need. They have a great ability to reach others because they are telling their own experiences.”
Although CNP has only existed for a year, the group is already influencing government policy. Two congressmen have asked for members’ feedback on bills to protect the rights of autistic people. The state agency in charge of integrating people with disabilities into society consulted them on the appropriate terms with which to refer to neurodevelopmental conditions. And the ombudsman’s office made a video with them to warn about gender bias in autism early detection. (In Peru, 81% of people receiving treatment are male.) ...
Creating a more sensitive society
The CNP community says its work has changed their own lives, but Díaz Pimentel recognises that it isn’t enough. Some experts agree – that the problems are as much structural as they are societal. “In Peru we have a gap in specialised human resources. We need more psychiatrists and neuro-paediatricians. We need more young people to choose these careers,” says Coronel...
[Natalie] Espinoza is also a CNP founder and the only founder who is a mother. She has a five-year-old autistic daughter. Finding a pre-school that would accept her was very difficult. Espinoza is familiar with that kind of rejection. At a former job, she was fired when they found out she has bipolar. She had always performed well, she says, but she was told that a person “on that kind of medication” could not work with them.
“When I found out that my daughter was autistic, there was no mourning or denial, just a desire to hug her tightly because I felt very afraid of what society might do to her. I would like her to grow up in a more sensitive place,” says Espinoza. Dedicating time to the coalition’s work is her way of contributing to that change. Currently its communications reach more than 12,000 people and it has 15 WhatsApp groups. Messages whizzing back and forth help their community in everything from getting diagnoses to finding places to sleep in the event of being evicted from their homes.
So what does the coalition want next? “We want it all,” says Lú Herrera, a lawyer with BPD and the fifth co-founder. They would love to create, for example, a “neurodivergent house”, a place where they can offer shelter to victims of violence, run educational workshops, organise neurodiverse entrepreneurship fairs and provide legal advice on inclusion rights. “Everything we already do but in a place of our own.
“You know what else we want to do in that house?” asks Herrera as if reminding herself. “We want to have mindfulness sessions, dance lessons, pottery classes. Activities that will ground us. We neurodivergents struggle so much every day that it would be nice to have a place to rest.”
For now, the picnics are opportunities to recharge, ready for the next conversation-shifting step.
-via Positive.News, March 13, 2024
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