HIV

I work with people who have HIV as a part of my job. If you have HIV please remember:

HIV can be controlled by medications for a super long time (think 30 years+). It is more like getting a diabetes diagnosis than a death sentence.

No matter how your infection happened you deserve to live and have a happy life.

By federal law in the United States there is tons of resources to help you get medication for FREE.

You can find partners who will accept you and love you.

You can have children who are born HIV-. If a child is born in a first world county with medical care the likelyhood of transmission is rediculously low.

On medication your likelyhood of infecting others decreases significantly depending on your viral load.

PEP and PrEP are exciting things to look into to be able to have unprotected sex and prevent transmission.

HIV does not have to be central to your identity.

People who take their medication like prescribed can actually have as few as 2 doctor appointments a year for their condition !

Don’t let stigma, fear and lack of education get you down! You are a wonderful person and can achieve wonderful things. Don’t give up.

And if you don’t know your status please get tested. Please!

Start using support levels instead of functioning labels!

For the uninformed, functioning labels are terms like high functioning autism, low functioning autism, mild autism, severe autism. Other words like moderate or level 1, level 2, etc may be used too.

Functioning labels are extremely offensive because they’re placed on autistic people based on observation from the outside. This is problematic for three reasons.

  • Functioning labels determine how autistic people are treated. People associate “low functioning/severe” with incompetence or infancy and they end up treating the autistic person like a pet or a baby. High functioning/mild gets stereotyped as people who are just a little quirky and their difficulties get ignored as laziness or intentional stubbornness.
  • Functioning labels imply brokenness and treat people as if their intrinsic value is determined by what they contribute to society rather than the fact that they are a living being with oxygen in their lungs and blood in their veins like everybody else.
  • Functioning labels create a dichotomy as if there are differing “levels” of autism or that people exist on different areas of the spectrum. NO, NO, NO, that’s not how it is.

Think of spectroscopy and how the elements create their own signature color lines. Now put peoples’ names in place of the elements: Hydrogen/Harold, Helium/Henry, Lithium/Luke, Oxygen/Olga, Carbon/Carol, Nitrogen/Nadine.

Autism is like that. We’re all on the same spectrum and all that is unique is how we display our symptoms, our sensory issues, our splinter abilities and so forth.

In light of that, I want to change the language. Let’s start pushing for support levels instead of functioning labels.

High support: Anyone who isn’t able to live independently and needs help with some or all of their basic daily living skills such as eating, bathing, basic grooming, putting on makeup, getting dressed and completing tasks. Can be abbreviated online or in writing as HSP for High Support Person or HSAP for High Support Autistic Person.

Usage in speech: Clarissa is a high support autistic person and needs assistance with getting dressed and taking a shower.
Abbreviated usage online: I’m a HSAP and I’m really into physics, so the poor sucker who signs me on is gonna hear a lot about it when they hand me my iPad! 

Medium support: Anyone may or may not live independently and doesn’t need help with basic living skills, but needs help with other things like cooking, completing some tasks, transportation if unable to drive and assistance for things like grocery shopping. Can be abbreviated online or in writing as MSP for Medium Support Person or MSAP for Medium Support Autistic Person.

Usage in speech: Kevin is a medium support autistic person and needs some assistance to prepare meals and shop for the wood he uses for his carpentry projects. His boyfriend, Max, usually helps him with those.
Usage online: I’m a MSAP and I’m looking for info about saws. Any fellow auties know what’s best for cutting oak? 

Low support: Anyone who more often than not lives independently and may only need assistance with minor things like balancing a checkbook, getting started on some tasks like organizing a garage sale or arranging to move from one house to another. Can be abbreviated online or in writing as LSP for Low Support Person or LSAP for Low Support Autistic Person.

Usage in speech: Jesse is a low support autistic person and she only needs help keeping her checkbook balanced.
Usage online: I’m a LSAP and I’m thinking about moving to Seattle. What’s the weather and traffic like there? 

Reasons support levels are better:

  • They don’t make assumptions about intelligence
  • They don’t encourage infantilization or pity
  • They sound more respectful and dignified

Ditch functioning labels and start using support levels. These terms can apply to practically every kind of disability, not just autism.

For the record, I’m a MSAP.

Please reblog this whether you’re disabled or not. Make this viral.

Larry Wilmore on Fresh Air:

“It was the Cosby issue that made me realize how much I really cared about women’s issues and how much I realize it’s important for me to be an advocate for issues that aren’t necessarily my own, to be an ally for issues. I think it’s one thing to be for your own issue and owning your own issue … but I think it’s also important to be an ally for an issue. … I think me being an ally for women’s issues is probably the most important thing that I feel I’m doing on the show.”

Advocacy is not cute

Sometimes disabled people get treated like they’re not adults.

This is particularly true when people with disabilities are involved in disability related advocacy. And it goes triple for people who have intellectual disabilities. (Or are perceived to.)

If you’re doing advocacy and someone treats it as cute, they’re being rude. If someone treats your presentation like a game you’re playing, they’re being rude. People should have more respect than that, even if they disagree with the point you are making.

If you think someone else’s advocacy is cute, it’s probably important to work on learning to respect them more.

Silencing tactics that I see all the time...

“You’re too high functioning to understand!”

“Your autism is so mild that it doesn’t even matter!”

“They’re too low functioning to understand what these issues are.”

“You don’t live with my severely autistic (family member/friend/etc) so you don’t know what you’re talking about!”

The above are bullshit silencing tactics. If you use them, you’re ableist, Full stop.

We autistic people here have the right to speak up for those of us who keep going unheard and misunderstood by allistics who refuse to presume competence or recognize that behavior is communication.

Yes, allistic caregivers may know what calms an autistic person down and may know some behavioral triggers, however they do not have that autistic person’s mind. They don’t know that person’s thoughts, dreams and hopes. They don’t know what that person is actually experiencing through their senses.

Do not tell an autistic person they are too high functioning to understand when they try to talk to you. No, you shut the hell up and you listen.

And PS, functioning labels are awful and need to stop existing.

I get it if someone you know being trans is hard for you, it’s natural to be scared of their transition. But you also have to know that you need to get the fuck over it and show your support because I assure you this is so much harder for them. You’re not losing anyone, you’re losing the false conception that you once had a son/daughter. It can be hard but in the end you have to be supportive.

motion to stop comparing the treatment of mental health to physical health

This is ‘inspired’* by the most recent example I’ve seen of the following kind of statement. I see this ‘idea’ pop up in my feeds at least 1-2 times a week and it’s sadly misguided. I would like to expand on a twitter rant I had.

* a result of my utter exasperation.

[a screencap of a tweet that reads: mentally ill ppl: i feel horrible parent: “it’s all in your head” physically ill ppl: i feel horrible parent: “let’s get you to the doctor”]

Many people that are physically healthy but have experienced mental health issues (either themselves or of friends or relatives) don’t realize that their experience of mistreatment and stigmatization is actually common for both mental and physical health. I motion that it is actually the norm; especially for young people, and even more so for female (cis or presenting) people. The deeper issue isn’t with how mental health is dealt with compared to physical health it is how both society AND our various health systems just don’t work how we expect them to (and arguably, how they should work).

It’s damn well time we move past the notion that the health system fails mental health but treats physical health with efficacy, dignity and respect. I am so tired of feeling punched down on by seeing this trite and naïve notion stated over and over.

I’ve dealt with both mental and physical health problems since I was a child and in both respects, on many occasions the health systems (British & Canadian) failed me. My parents failed me on both accounts too. Hell, I failed myself until I almost died and learned to self advocate. After a lot of hardwork on my part, I have many diagnoses. I still have no access to effective treatment for the vast majority of those diagnoses. Both my physical and mental health issues are still heavily stigmatized; even by those that mean well. I am entirely traumatized from my life long experience with the system, my family and society. I assure you, my physical diagnoses have received zero special treatment.

Below I’ve inserted my Twitter rant on the subject so it may be a bit disjointed and impassioned (and some redundancy) but there’s also some important points I left out above.

Physically healthy people assume this abt healthcare: 1. Go to doctor, tell them yr symptoms. 2. Doctor listens, believes you & diagnoses >

— cherry, ☃ (@cherryrae)

January 15, 2016

3. Dr gives treatment for accurate & thoughtful diagnosis, never questions your motives. 4. You are either cured, symptoms are controlled >

— cherry, ☃ (@cherryrae)

January 15, 2016

or you die (as in cancer for example). This is so far from what actually happens it’s not even funny.

— cherry, ☃ (@cherryrae)

January 15, 2016

At best this is accurate for common, minor bacterial infections; almost nothing else. Not even common viruses or early caught common cancers

— cherry, ☃ (@cherryrae)

January 15, 2016

One major contributing factor to me not getting any physical diagnoses until I almost died was my parent’s, doctors AND my own lack of help.

— cherry, ☃ (@cherryrae)

January 15, 2016

however I got many (incorrect) mental health diagnoses by the time I was 22. So, come on. Physical Health is rarely treated how you expect.

— cherry, ☃ (@cherryrae)

January 15, 2016

Most especially if you are a young woman. You can’t possibly be physically ill, especially if you have mental health issues (or even don’t!)

— cherry, ☃ (@cherryrae)

January 15, 2016

Furthermore, finally getting a diagnosis in my early 30s AFTER I nearly died doesn’t mean I’ll get effective treatment either.

— cherry, ☃ (@cherryrae)

January 15, 2016

So, stop comparing! You may be flabbergasted to know there are deep parallels btwn the mistreatment/stigmas of both mental & physical health

— cherry, ☃ (@cherryrae)

January 15, 2016

and two from my friend:

@cherryrae my exp with MDs involve coercing them into doing their job. So far, my ailments are minor. can’t imagine if things were worse :/

— Nomi Chi (@nomidraw)

January 15, 2016

@cherryrae Srsly. It’s really awful trying to find the right combo of words to get a medical practitioner to fucking believe you/help you.

— Nomi Chi (@nomidraw)

January 15, 2016

Let’s support and advocate together for better diagnosis, management, treatment and less stigmatisation of all health issues; mental and physical. Both kinds are appallingly mistreated and misunderstood, comparing the two won’t change anything. Our society and our medical systems fail us on a daily basis, let’s get through this together, not apart. Let’s at least have understanding and compassion for all.

Today is #HumanRightsDay, a time for people to help build a world where LGBTQ people are embraced in every community. All should have the right to feel safe living as their authentic selves. Like always, we create that safe space for youth by having counselors on call 24/7 at 866-488-7386, TrevorChat.org, and TrevorSpace.org. But, we are also fighting for the mental health rights of the community so that they will have brighter futures moving forward.

Through our advocacy efforts, we’ve helped get conversion therapy banned in Illinois and Oregon, and in Burbank, we’re implementing a school suicide prevention policy. We’re also fighting to get mental health services funded across states, tribes, and universities through the Garrett Lee Smith Memorial Act. By next year, we hope all these advocacy efforts become realities on a nation-wide level. 

Help us in this fight for human rights at thetrevorproject.org/advocacy.

New ‘myVoice’ project for autistic young people

The UK autism charity ‘Ambitious about Autism’ has recently launched a new project called ‘myVoice’ which is targeted at autistic people aged 16-25. The project is designed to help young autistic people to transition from school to the next stage of their life and hopes to make higher education and workplaces more accessible by asking young autistic people what changes they would like to see. It is partly funded by the Department of Health of the UK government. 

The new myVoice YouTube channel contains videos with tips and advice from young autistic people for young autistic people on various topics such as university, work, friendships and self esteem. 

If you’re autistic and aged 16-25 (and probably unfortunately only if you live in the UK) then you can volunteer with myVoice to help produce online content and, in some parts of the UK, help make local facilities more accessible by working with the local authority in your area. You can sign up for more information here, find out about different roles here and watch the short video about it below:

The myVoice website contains lots of information, articles and advice written by autistic people and I’d really recommend it to anyone aged 16-25 who is autistic. 

As an autistic person in this age bracket I’m really excited for this project. By listening to and working with actually autistic people as well as most of the articles and content being produced by us, I think it has the potential to be really great and I’m hoping to get involved with the volunteer scheme. 

Apply to Volunteer for Asexual Outreach!

Interested in getting more involved in ace advocacy through Asexual Outreach? We are seeking volunteers to fill four new positions in our organization - our Program Coordinator, Events Manager, Volunteer Coordinator, and Youth Advisory Council Coordinator. This is a great opportunity for you to make a substantial difference in our community, all while working on meaningful projects with supportive and appreciative teammates!

If you’re interested in any of the above positions, or if you have a skill set that doesn’t necessarily tie into those positions but you still want to help out, take a look at these positions and other opportunities, and then apply at http://asexualoutreach.org/get-involved/volunteer/

Advocacy in Nursing....what will you stand for?

Nurses tolerate a lot. It comes with the territory, but over time you begin to learn what you won’t tolerate. Two things I’ve come to learn one shouldn’t keep quiet about; bullying, and safe staffing. Speaking up about bullying, and it continuing despite my concerns,resulted in me resigning from a position earlier this year, and speaking up about safe staffing resulted in me being terminated this week.

When I first began working ICU about 5 years ago, every shift the nurses were expected to take 3 patients. That’s 3 critical patients. Perhaps one downgrade, but then with the revolving critical door, you get a cardiac arrest, or trauma that necessitates one on one care, let alone…3 patients. It’s unsafe, yet just like many coworkers, I learned to tolerate it, until one day I learned that apathy was more frightening than tolerance.

A week ago, the assignment they gave me included a post arrest, a combative GI Bleed with a tanking BP (I’m sure many of you can picture this one well), and a Hepatic Encephalopathy planned for extubation (failed twice, and labored breathing that day). I voiced a concern. I voiced it is unsafe. I voiced I do not have the option as a full timer to protest the assignment, hence no union to protect me if something goes wrong. The response? The charge nurse got it. She requested another nurse to our unit from nursing office . The other nurses got it. They were in my shoes too many times with too many protests unheard. The doctors got it - ICU doctors are some of the most supportive I’ve encountered. The nurse manager didn’t get it, and this is a greater concern when a manager does not support his/her nurses. A manager, who does not value concerns of safety. A manager who doesn’t remember what it’s like to be a bedside nurse. The concerns aren’t for my assignment alone. We can take the patients, but care is compromised. The concern is for patients who won’t receive nurses at their optimum, the concern is for fellow nurses, and future nurses who should not have to endure this to the point of complacency, burnout and quitting the profession.

When we ignore a nurse’s concern for safe staffing ratios, we not only undermine their vital role in patient advocacy - we also devalue the quality of care that administrators so adamantly profess as our mission, and we devalue the lives we are entrusted to care for. As a profession, we need to bring it back to basics of care, and it begins by hearing the nurses when they protest unsafe staffing.

I had a quote running through my head that morning, ironic really, or perhaps foreboding since I had a feeling it would be a 3 patient day; “Those who stand for nothing, fall for anything.”

Speaking up isn’t just about quotes though, it’s action. It’s risk. It doesn’t feel pretty, it isn’t neat, it doesn’t make you feel proud. It gets you in trouble. It pisses people off, and it sometimes leaves you feeling defeated.

But it feels right.