severely disabled

I love my parents but they brought 6 children they could not afford into this world and kept them out of school because they thought it would please god. Now my mother is dead and my father is severely depressed and completely disabled and i fear doesnt or cannot really see to or do anything to help our futures at all. I feel doomed. The God they tried to appease filled our lives with sickness and death and poverty. Sounds so dramatic but its true. Anyone would agree my situation is hopeless and im tired of trying to pretend it isnt

Why Embracing Emotional Distress is the Best Medicine Sometimes

Much of our mental suffering is caused by our overwhelming attempt to avoid it. We think experiencing any sort of anxiety is a threat to our existing, but psychology studies have proven that one learns from struggle. One becomes a better human being through heartache. Let us explain with the science behind this theory..

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Note on diagnoses and the levels of “severity” of mental illnesses

We recently got an ask on MIM about severity of mental illness and what qualifies a mentally ill person as severely ill or not. This is a thing that comes up reasonably often in conversations I’ve had with people about mental illness, so I’m giving it it’s own post.

This is a generalized summary, and not meant as a way to assess the severity of the illness of yourself or others. Some of the clinical ways of measuring these indicators require third party observation, and there is not nearly enough detail here for anyone to assess based on my post. If you have any questions about this, feel free to message me here or on MIM.

Everyone deserves support for their mental health; this post is meant to clarify how clinical professionals might perform triage on mental health conditions. If you are in emotional/mental distress, please seek support. You deserve it just as much as anyone else does and your struggles are still your struggles even if it seems like other people have it “worse”.
_______________________________

Serious and less serious aren’t medical terms here. I’m not a psychiatrist or a therapist, but I am a certified mental health specialist in peer support. I work closely with clinical and non-clinical mental health professionals, and with people living with mental illnesses. I’m writing from that perspective.

All mental illnesses have a profound impact on the people who have them, but there is a bit of a breakdown in how professionals assess different cases of psychiatric illness. This doesn’t make any mental illness or any person with one any more or less valid than any other person or diagnosis.

First, there’s timeline. Mental illnesses can be brief or chronic. Some people, for instance, will have one or two episodes of depression, and then never have an episode again, sometimes without the need for long-term medication. Other people will have persistent symptoms that can last their entire life.

Next, clinicians take into account the extent to which a mental illness affects a person’s life. They measure this through subjective distress experienced by the person as well as the extent to which their ability to function is impacted. Both measures are equally important for the individual, but in terms of treatment, priority usually is given to a person’s ability to perform “major life activities”, such as caring for oneself (food, hygiene, etc), occupation (not necessarily labor/work), and learning.

I could go into a lot of detail about how functioning is measured, but I’ll keep it brief for now. If a person is in distress but still functioning “normally”, their condition might not be considered severe in the same way as someone unable to perform major life activities.

Length of illness and disabling impact of symptoms are the two main ways that severity can be designated. They are measured separately, and a person can have a chronic MI that has low impact on them or a severe episode that lasts a month and never comes back. All mental illnesses are valid, but treatment priorities and approaches will change based on these measures.

Ease of symptom management and consumer response to treatment are also factors for people with a psychiatric condition. Some people see almost complete management or even elimination of symptoms with medication, therapy, and/or lifestyle changes. Other people have symptoms that are only managed to some partial degree. Some people may not respond much at all to any currently existing treatment, and may need assistance with life activities indefinitely.

There are some diagnoses that require various lengths of time or impact on functioning to be put in place. There are modifiers and different labels in each general category of psychiatric illness to help treatment providers communicate about these different factors. Overall though, there is no exact “list” of which illnesses are “serious” and which ones aren’t.

Bottom line, all people living with mental illness are able to be treated as individuals, rather than as a label of “serious” or not.

Hope that makes sense,
Rowan

Am I disabled enough for my service dog?

One of the things I’ve gotten a lot in my ask box that I want to address is this. 

The short answer is: Does your service dog lessen the severity of your disability in some way? If that answer is yes, then congrats! You are disabled enough for your service dog. 

The longer answer is: 

This is a hard question to answer based on the little information I’m given about people. I don’t know what your disability is, and I don’t want to know unless you’re willing to share that with me. I don’t need to hear a list of your daily struggles to be able to give you the approval you seek. My word is not law when it comes to being a service dog handler, and I don’t want it to be! 

The service dog community can be really bad about gatekeeping, I know. I’ve been there. It’s really easy to feel like you are “not disabled enough” for your service dog. Especially if your dog’s primary task is to perform deep pressure therapy - because for some reason this isn’t seen as a true “task” by a lot of people, and frankly I don’t know why. Training your dog to sit still and apply pressure on your body is definitely a trained task and takes practice to get right. My dog still has trouble with digging his elbows into me sometimes, and we’ve been working on DPT training for over a year. 

That said, a lot of this feeling of not being disabled enough has nothing to do with the tasks that your dog can or cannot perform for you. It’s an internal feeling that you get - that a lot of disabled people get - when they’ve been doing well. I get it. My mother gets it. It’s just part of the process. For some reason your mind just decides that because you’ve not been sick for a while, you must be faking it. If you don’t get that feeling, then this post probably isn’t for you. 

The fact of the matter is, you have a disability that requires the assistance of a service dog. That’s why you spent so much time training (or were able to receive from a program) a service dog. Somehow, some way you are disabled and struggle in a way that a dog can help you. Whether that be by applying deep pressure therapy or fetching medications or assisting with mobility, it doesn’t matter. Your disability is alleviated in some way by the presence of a service dog. 

Sure, I can go to the store without Hesper sometimes and I don’t have any problems getting my items and interacting with the cashier. That’s because I’m having a relatively good day. However, it doesn’t take much to tip the scale in the other direction. Sometimes all it takes is for someone to accidentally brush my arm, and I’ll completely break down into a panic attack. Would I need Hesper then? Of course I would! That’s why I have him. He’s a safety net. I may not need him 24/7, but if he isn’t there when I do need him, it can be -gasp- disabling! 

I know, that’s shocking. Take a moment to soak that in because I’m sure it’s no different for you, regardless of what your actual disability is. 

Don’t let people tell you that just because you’re doing well and having a good day means you don’t need your service dog. Don’t let your own mind make you believe that either. If your service dog helps you in some way to manage your disability when you’re doing badly - that means you are disabled enough to have a service dog. 

Mind signal boosting me? I’m a 19 year old woman from Denmark who goes by the name of Mirka. I’m autistic and mentally ill (psychosis and depression) in ways that severely disable me, so I’m unable to work or study and I live in an open institution where’s there’s people around to help me out with all the things I need help to. On @psychotistic I blog about my everyday life as one those disabled, sick people who can’t fit into and adjust to society, answer whatever questions people might have and rant about what I’m up to - including but not limited to my pretty chaotic dating life. If you’re curious about life as an institutionalized disabled person, if you’re autistic or mentally ill yourself and want more people on your dash who can relate, if you’d simply like to follow more personal blogs or if you for any other reason think you might find me interesting, then you’re more than welcome to follow me. I’m on a constant quest for validation and attention and I’d really appreciate some new followers.

Disability is not a number

Disabled people are as different from each other as we are from nondisabled people. Sometimes people don’t understand this. Instead of looking at specific impairment, they look at what they think of as severity. It’s as though they’re thinking, ok, on a scale of 0-10, how disabled is this person?

This can lead to a bizarre opposite reaction to disability and disabled people. People not only respond to disability based on stereotypes, they often respond based on the stereotype of a completely different disability. 

For instance, sometimes people who think of blindness and deafness as the same level of disability will respond to blind and deaf people interchangeably. (And often in ways that wouldn’t be helpful in any case). Because they don’t think about vision or hearing, they think about a severity category. 

Eg: a waiter who thinks this way might see two people signing to each other, notice that they are deaf and bring them a braille menu. Or they might, halfway through taking an order, notice that the customer is blind — then start talking really loudly. 

They don’t pay attention to the physical reality of the person they’re interacting with. Instead of thinking about what this person’s disability is and what accommodations they need, they’re looking in a box marked something like “what to do when you meet a level-8 disabled person”.

In real life, disability isn’t quantitative, it’s qualitative. Having a disability means something physical and/or cognitive, which will be different for every disabled person. It matters what type of disability someone has. It matters how that disability affects them, specifically. It matters what their preferences are, and what they’ve found works for them. Thinking in terms of severity level won’t tell you any of the things that matter most.

the TSA is a piece of shit

so I never make posts this long or involved, but I was so angry I had to speak out, and I knew the Tumblr community would be on the same page. Even if this only reaches 15 people, I’m asking you to please read this and spread the word.

I’m a caretaker for a severely disabled 17 year old girl. She has a primary diagnosis of what’s called isodicentric 15 (IDIC 15 for short), which is a chromosomal abnormality that causes extra material from chromosome 15, in addition to having autism & epilepsy. She functions at about a pre-school/kindergarten level developmentally. I will refer to her as E to protect her.

Recently, E and her mother were flying to Florida to visit family. While E is TSA approved, she was still selected to be “randomly searched”. Her mother tried to explain to the TSA agent that she is severely disabled and would not tolerate being searched (part of her disability causes her to hit, kick, & scream when she is in an uncomfortable/unfamiliar situation. In addition, she does not respond to verbal commands, as she has limited receptive & expressive language skills). The agent replied with “she looks fine to me. What does she have?”. When E’s mother explained IDIC 15, the agent said “I’ve never heard of that”. E’s mother asked to speak to a supervisor to which the agent replied “I am the supervisor”.

So they took E into a separate room, forcing her mother to stand outside, despite her explaining that the process would be much quicker and easier if she could be in the room with E. TSA objected, proceeding with the search. E of course did not comply, and she screamed, cried and objected while her mother was forced to watch outside the room. The agents tried to explain to her that “honey, if you just put your arms up and listen this will be a lot quicker”, but being that E has LIMITED RECEPTIVE LANGUAGE SKILLS, that made nothing better. A man even came over to E’s mother, watched the situation and said to the agent “is this really necessary? I can hear that child screaming from down the line, this isn’t right.” E’s mother also tried to explain that she has epilepsy and that when she gets upset or overstimulated, she has seizures. The agent replied with “we’ll just call first aid then”.

The TSA has been under fire lately as is. Most of you have likely heard of or seen CNN commentator Angela Rye’s horrendous situation of being inappropriately touched by a TSA agent until she was in tears. If you haven’t, here it is:

http://www.cnn.com/videos/travel/2016/12/21/angela-rye-tsa-pat-down-video.hln

How sick and disturbing is this? An organization meant to protect us, instead putting a severely disabled girl and her mother in distress, in addition to inappropriately touching a woman as part of a “routine search”. I’m appalled, disgusted and truly upset.

I’m hoping you guys will be willing to spread this so more people are aware of what a piece of shit the TSA is.

Homeless Trans Youth Needs Money for Food/Meds/Housing

New post because things are getting really gross again. My new social worker gave me a housing option ONLY IF I attend a physical school every day (I am too severely physically disabled for a physical school, and my grades plummet when I’m in physical school). I asked if we could discuss it as I’m registered full time in an online high school, and he closed my case and put me down as having rejected the offer (which I did not). Now I can’t apply for welfare, the social worker won’t return my calls, and I’m being kicked out of my shelter on the first.

In the meantime I have no money for food (and I’m almost out, I have maybe half a meals worth), no access to transportation, no money for my medication I’ll need next Monday, and no money for rent in the one place that was willing to sign on a minor with no physical address or phone number.

I need donations to eat. I can’t get a job until I have a phone number and I don’t have a place to sleep in a week.

Please please boost and/or donate. I really don’t want to starve, and the food bank won’t give me anything without an address.

If you’re on mobile my paypal is ezekiel.i.peterson@gmail.com.

we’re all familiar with the casual ableist

now get ready to meet… The Qualified Ableist™️

“As the sister of an autistic guy, daughter of a special education teacher, and past tutor of several disabled kids …”

^ Actual quotation from a real live Qualified Ableist™️

Tired of dealing with ableists who lack real-world authority and power over your life? Is the average ableist just too inexperienced to meet your needs? Our ableists should know better!

Book your free consultation appointment today and get thirty days of bullying and bullshit for half the usual price! Call now!

I’m doing commissions. Icons will be 4$, full bodies will be 7 (flat price) and anything complicated will be discussed. 

 I dont wanna bug anyone but I’m kind of starving and it’s not fun!

[triggering stuff below, just my life and how shit it is rn]

I moved away to leave an abusive family, and I can’t go back to them so I’m stuck here

My bf and I have lost 30 pounds in the last month and I’m severely disabled. I have a job coming up but no promise that I’ll get to go there and I really need some help keeping my living situation. I’m constantly threatened to be kicked out and I cant live on the streets because of my disabilities, we’ll probably not make it. My bf has been close to suicide (closer than usual) and he’s one of my FPs and I have no idea how this will turn out for me. I have breakdowns a lot because of my mental health and C-PTSD, I cant handle any of what’s going on now. I know there’s a lot of these going around so I wont pry but I really need something to keep myself eating, and my cat might die soon so I need to set up arrangements for that. My bank is -40$ and I need to get through that before I can even do anything. 

Again this is for my bank, food, medicine, and possibly my cat’s death which is gonna come up to around 300$. So in total I need about 5-600. It’s a lot but commissions might get me there. 


[end of triggering shit]

If you can even spare 50C I’ll draw you something, I seriously need some help.

You can ask me anything that isnt triggering if you don’t believe me. Thank you.

Paypal: paypal.me/TheMothQueen


-Phoenix (they/she pronouns)

This morning, Trump spokeswoman — and future award-winning Meryl Streep role — Kellyanne Conway weighed in on the reporter controversy by explaining we shouldn’t get hung up on little things like what Donald Trump says and does. (Clip of Conway saying, “You always want to go by what’s come out of his mouth rather than look at what’s in his heart.”) Yes, stop listening to his mouth and stop making fun of what’s in his heart. It would be cruel because his heart is severely disabled. It is medically incapable of empathy.
—  Stephen Colbert
Question

Often Mental illnesses are clumped with disabilities. However, according to the government only a set of mental illnesses with a certain “severity” is considered a disability. I started researching this bc I had seen a flyer for more diverse books, and it included disabilities, but under the description of Disability, mental illnesses weren’t included. So where do people with mental illnesses fit? Are we not under diversity? If we are not considered to be under disability then why don’t we have our own branch/section? It’s really annoying that mental illness is barely mentioned, but to not include it on a “diversity” flyer? Really? I’m not trying to take away from having more diversity for people with disabilities. Representation for people who have disabilities in media and books is important. And Mental illness Representation is important too. 

Do people who have mental illness feel we should be separate, and have our own section? Is it important that people say Mental illness or is Disability enough even if your illness doesn’t fall under being a Disability? 

Where do people with Mental illnesses fit under Diversity & Representation? 

UGANDA. Near Gulu. September 23, 2016. At the Pagarinya refugee camp in Adjumani District, Jeffrey Michael, a severely disabled boy crawls in the dirt near his tent. 

For the mentally handicapped living in the refugee camp is a constant struggle to get proper medication, and wheelchair access. The outbreak of violence in the capital Juba last July created a humanitarian crisis in northern Uganda as thousands of South Sudanese sought refugee there. The country is hosting the lion’s share of South Sudanese refugees, with 373,626, more than a third of them arriving since early July. The fighting was a major setback to peace efforts in South Sudan, coming as the troubled new nation prepared to celebrate its fifth anniversary, amid a short lived peace deal between supporters of President Salva Kiir and former First Vice President Riek Machar.

South Sudan now joins Syria, Afghanistan and Somalia as countries which have produced more than a million refugees. While some South Sudanese may attempt to head for Europe, the numbers within east Africa are comparable in scale to recent refugee flows to Europe from the Middle East, and their traumatic experiences due to war are often just as hellish. More than 85 percent of the refugees in this recent influx are women and children. Many children have lost one or both of their parents, some forced to become primary caregivers to siblings. With the large influx of refugees in July 2015, relief agencies had to implement stringent food rationing in the refugee settlements. Currently the international humanitarian organisations lack the necessary funds to meet the needs of the more than 200,000 refugees. 

Photograph: Paula Bronstein

anonymous asked:

I heard about the spoon theory a while ago but I never really thought myself as a spoonie (diabetes) like yah I can't shovel the snow for 30 mins without getting low and feeling like death but I can go walk around the mall and have a full day without feeling any or few affects. So kinda what I'm wondering is does the spoon theory have different amounts of spoons for different disabilities? I feel like me and someone with CF could go through the same day and they over do it and I'm fine. Thanks!

I think the spoon theory would definitely have different amounts of spoons for different disabilities, or different severities of disabilities, or even different the same people at different times of their lives. 

Maybe you get 20 spoons and someone with CF would only get 10 or 15 (it’s so hard to apply accurate numbers to spoon theory, but just for the sake of this question,) but if you need to count spoons at all whereas a healthy, nondisabled non-ill person wouldn’t, spoon theory could still apply to you, if you want to identify with it. 

I’ve personally always really liked spoon theory (even if I think my favorite part is just that I like the term “spoonies” as something that can apply widely to just “less-typical people health or ability wise”) but a lot of people don’t feel it describes their day to day life for a variety of reasons, and I know there are other replacement theories out there, though I can’t think of any off the top of my head right now. 

Person-First Language

I have a doctoral degree in occupational therapy. In undergrad, I took a disabilities studies class, and in grad school I took several more disabilities studies classes. One thing drilled into my head in these types of classes is “Person-First Language” I.E. “Person who uses a wheelchair” vs “Wheelchair bound” and “person with autism” vs “autistic”.

In my undergrad class we did not really discuss with other people with disabilities what they thought of person-first language. My undergrad class was taught by a non-disabled professor who had an adult son with cerebral palsy. My grad school classes were taught by both people with and without disabilities. 

I myself have multiple disabilities, both mental and physical (Among them: I’m HH, an amputee, have Ehlers-Danlos Syndrome, have depression and depersonalization disorder, et cetera) and despite what has been drilled into my head, I prefer identity-first language myself, because my disabilities, while not my entire identity, are a part of my identity. 

People have many aspects to their own identities. In the occupational therapy world, we call these “occupations”, which means, “aspect of yourself that occupies your time”. Among some I am a: woman, sister, occupational therapist, vlogger, public speaker, atheist, amputee, writer, daughter, body-modification enthusiast, and so on.

I am NOT a “person who has womanhood”, “Person who has sisterhood”, “Person who is an occupational therapist” “person who has vlogs” and so on. These are my occupations and I use occupation-first language when I talk about them.

Why would it necessarily need to be any different with disability? Disability is an occupation and is part of my identity. I’m not a “person with an amputation”, I’m an amputee. When I am using a wheelchair, I’m a wheelchair-user.

Some disability-related language is outmoded and just flat incorrect. A good example is “Wheelchair-bound” because A: No one is “bound” to their wheelchair and B: wheelchairs set people free, they don’t bind them. Imagine if someone called me “prosthesis-bound” because I use a prosthesis to get around. My prosthesis allows me to function better and ambulate more freely in my community. Oddly, I am actually more “bound” (by way of suction, as in the prosthesis is literally stuck on my body) to my prosthesis than the average wheelchair-user is “bound” to their wheelchair! However there are more alternatives than just “person-first” language.

Person-first language creates a linguistic space between the person and their disability. I think that space contributes to seeing disability as a negative aspect of one’s identity and therefore has the potential to contribute to ableism. Note that I say “potential” because there are different schools of thought on exactly what constitutes person-first language.

My preference, generally, is identity-first language. Example: Hearing-impaired girl vs She is Hard-of-Hearing vs She is a person with a hearing impairment. I think, personally, that the middle one is best. It’s not disability-first, it’s not quite person-first, it’s identity-first. 

Having said that, I prefer person-first language for mental illness, because my mental states fluctuate. I might have depersonalization disorder and depression but “being depersonalized” is a fluctuating state.

The thing is, lots of people have different preferences about how they would like to be addressed, and when you’re mucking about on the internet or talking to someone you don’t know, you might not know what type of language they prefer. Some communities, in general, actively dislike person-first language, so it’s good to keep that in mind.

Also, sometimes person-first language just makes more sense linguistically. I have Ehlers-Danlos Syndrome, I am not an Ehlers-Danlos Syndromite or whatever.

Anyway, here are some tips about how to know when to use whatever language, if you’re curious.

1. Ask a person what they prefer. 

2. Don’t ever tell a person with a disability that they are using the “wrong” language for themselves. If someone who is an amputee wants to call themselves “handicapable” and you think such language is condescending but you yourself are not an amputee, respect that person’s personal choice of self-identifying language. 

3. If you interact with a community of people frequently (whether it be the Deaf community or amputee community etc), figure out if that community has a general consensus on language and go with that.

4. Recognize that while some language can contribute to oppression of people, actual oppression is of far greater concern than language which has the potential to contribute to oppression. 

we all think that life is gonna take us till we’re 85 with a husband/wife and grandkids galore. but life holds no mercy. situations come without any warning. we can be 22, slammed by a rare form of cancer that has no survival rate. you never know. hold the ones you love extra tight, everyday. live like today is your last day because we really don’t have tomorrow promised.

  • what glee did: promoted healthy gay/lesbian relationships, made viewers aware of the struggles transgender people go through, promoted feminism in several episodes, had several characters with disabilities, had characters with backgrounds of sexual abuse, had characters of many different ethnicities and religion, showed what many high school students have to go through (i.e. teen pregnancy, homelessness, trying to provide for their families, not being accepted)
  • what most people think glee did: just added another typical high school show

if i may make a suggestion: 

if you’re not disabled, don’t say things are accessible without checking with a disabled person (preferably more than one, really, and with different disabilities). this goes for websites, events, buildings–pretty much everything. because i cannot tell you how many times i’ve heard “it’s accessible!”, gotten excited, and then felt totally betrayed when it turned out to be inaccessible to me. 

accessibility doesn’t just mean ramps where the stairs are. accessibility is very intricate and complex, and disabled people have different needs based on our disabilities–and as abled people, your brains probably don’t make the leaps and connections that ours do because we’re so used to navigating a very unfriendly world. 

even a disabled person who wouldn’t necessarily need, say, accessible bathrooms is still probably more likely to know what exactly constitutes accessible than an abled person, because these are things we talk about within the community and we can critically analyze accessibility differently from you guys. 

this is getting longer than i wanted but basically please just check with disabled people about whether or not something is actually accessible before you get our hopes up. 

Ostracization and isolation as a go too method for social justice spaces is dangerous for certain very vulnerable groups of people (like say trans women and severely disabled people) because it can literally lead to complete and total denial of survival resources. 

Which in turn leads to death.

So you have to ask yourself, “is execution what this person deserves for whatever problematic or harmful thing they said or did?”

It’s not hyperbole, if you’re ostracizing certain people on a mass scale, you’re adding your signature to their death warrant. At the very least you’re looking at such a severe impact on their physical health (say from homelessness) that if it doesn’t kill them it certainly will not leave them with a long lifespan. Also more vulnerable groups are more likely to get the most extreme of treatment. Think these isolation methods are hitting the most powerful the most? You’d be wrong.

So you have to ask yourself if you’re okay with the high risk of that person dying or losing a large number of years off their lifespan.

If you aren’t, alternative methods of pushing them to be accountable and improve need to be sought.