Need help: ROUGH DRAFT Making spaces accessible to people with invisible disabilities

Making spaces accessible to people with invisible disabilities:

While others have covered making spaces accessible to people with physical disabilities, I want to tackle the invisible ones.  Many people in our society live with invisible disabilities.  In the US alone it is estimated that 10% of people are living with an invisible disability and 96% of people with a chronic illness are living with a disability.  This means that more then likely you know someone who has one.

Examples are, but are not limited to:

ADHD Anxiety disorders Arachnoiditis Asperger Syndrome Autism Bipolar disorder Brain injuries Charcot-Marie-Tooth disease Chronic fatigue syndrome Chronic pain Circadian rhythm sleep disorders Coeliac Disease Crohn's disease Fibromyalgia Diabetes Lupus Epilepsy

Major depression Metabolic syndrome Multiple Sclerosis Multiple Chemical Sensitivity Narcolepsy Personality disorders Primary immunodeficiency Psychiatric disabilities Reflex Sympathetic Dystrophy Repetitive stress injuries Rheumatoid arthritis Schizophrenia Scleroderma Sjögren's syndrome Temporomandibular joint disorder Transverse Myelitis Ulcerative Colitis.

Let’s start with the easy stuff:

Do not judge people by their disability.  We are not our illness.

Have seating available.  I have been to so many activist meetings that have “floor only” seating and on a “first come first served” basis.  Have chairs available, and a variety from hard surfaces to cushy ones and make sure people know that they’re not “first come first served,” but that they are reserved for people who need them.  People with chronic pain may need a cushy chair and people with other conditions may need a hard backed chair or else they may not be able to get back up again.  Sitting on the ground and being able to stand back up is a luxury, never forget that.

Watch your words.  Describing things as “schizo,” “psycho,” or “bipolar” are not cool (for example, there are a ton of words you can use that slur the disabled but they are too many to mention – if you think it can offend DON’T USE IT).  I just heard someone describe the weather we were having as “bipolar.” DO NOT DO THAT.  That is screwed up beyond belief and reinforces the stigma against people with mental health issues. Do not refer to anyone as a “crip,” “gimp,” “wheels,” or “blink,” etc. even if they do themselves and definitely don’t use that to describe them to anyone else.

Don’t ask stupid questions. This kind of goes hand in hand with the above, but ffs DO NOT ask someone personal questions about their disability.  If someone wants to share their life they will, but DO NOT UNDER ANY CIRCUMSTANCES DO THE FOLLOWING AND CALL PEOPLE OUT WHO SAY THIS:

- ask someone how they “got” their illness

- tell someone with a mental health disability that they can “snap out of it”

- ask people if they’ve tried X remedy instead of medications, chances are they have

- ask anyone with PTSD what their traumatic experience(s) was (were)

- at any point talk to them in a patronizing manner

- act like you know what it’s like to have a mental health disability b/c you (and this is a real example) “felt depressed once too”

- act like you are an expert at their disability b/c you read up on it

- DO NOT ASK US PERSONAL QUESTIONS.  WE ARE NOT PUBLIC PROPERTY.  NOTHING makes this OK.  Not “If you don’t mind me asking,” etc.  If we wish to share this information we will, but invasive questions from strangers are not welcome.

- Don’t yell.  Some people are very sensitive to loud noises and it can trigger others.

- Do not stand behind people – this can be very triggering.

This list is not exhaustive.  Again you should use your judgment.  If you are unsure DO NOT DO IT: it is probably rude.

Be aware of touching.  You may think that tapping someone on the shoulder from behind to get their attention is A-OK, but trust me it can make someone jump out of their skin (I’m guilty of this too).  I’ve found that a lot of people in the activist community are survivors of one sort or another and have PTSD.  One of the things a lot of survivors don’t like is being snuck up on or touched by random people.  I made the mistake of touching a friend of mine on the shoulder once to get her attention and she nearly jumped across the kitchen.  I wasn’t threatening her, I wasn’t a stranger, but I took her by surprise and I touched her in a way that she was uncomfortable with (tapping her on the shoulder from behind).  Since people don’t always know what will set them off, and are not always vocal about their conditions it is best not to touch people you don’t know, even if you think it is something innocuous like tapping them to get their attention.  Just don’t do it.  It’ll make everyone more comfortable.  Take it like you’d take sex.  ASK PERMISSION.

Control the environment.  If it gets too hot, too cold, too drafty, or too stuffy it can cause problems for people with certain disabilities or chronic illnesses.  It can aggravate these conditions and sometimes cause the onset of certain symptoms.

Do not touch a Service Dog without asking.  A Service Dog is working.  Petting it without permission may be distracting it from it’s designated tasks and create a problem for the owner.  Many Service Dogs are also trained not to sniff/acknowledge people when in their vests/when they are working.

Invite people to ask for help if they need it, and don’t treat them strangely if you think that any request is “weird.” 

Act like their partner is their “handler” i.e. talk to their partner instead of them.  Each person is still a person no matter if they have a disability or not.  Talking to their partner/friends instead of them is a disgusting thing to do and dehumanizes them.  DO NOT DO THIS!!!!!!!!

Disability Carnival NOW UP at Not My Disease!

Disability Blog CARNIVAL # 82 which is titled FIRSTS

Read all about people's 1sts there!

At I'm Not My Disease

What is your definition of (dis)Ability?

This debate has come up in forum I am a member in. People say that severe food allergies should count - I'm saying no. As a sufferer of a severe food allergy and a person with a (dis)ABility (several in fact) I call foul.

Your thoughts?

(dis)Ability Zine CALLOUT!

I am doing a callout for submissions! DUE APRIL 30TH! PUBLICATION MAY 15TH!

I am putting together a print-zine about (dis)Abilities and the activist community. Your post can be about anything related to that topic, whether it has to do with your identity as an Activist with a (dis)Ability or difficulties fitting into your chosen activist scene (e.g. Earth First!) as an Activist with a (dis)Ability.

Possible topics:
Did you come to activism through your (dis)Ability?
Does your (dis)Ability make it harder for you to be taken seriously by people in your community?
Do you feel you have to teach people what life is like in your shoes?
Do you feel that you are by default a (dis)Ability Rights activist?

From the peanut gallery:
What are ways that people can make spaces more accessible to people with (dis)Abilities?
How can we make spaces accessible to both invisible and visible disabilities at the same time?
What are the different accommodations needed for different (dis)Abilities?
How do we handle Service Dogs?

Nitty gritty: DUE APRIL 30th, Publication May 15th. All people who get published will get a copy or two free! Proceeds will go to a (to be voted on) (dis)Ability Right's Activist group! Send me your pictures, poems, essays, 1st hand accounts, critical analyses, etc BY APRIL 15th! I want this out on MAY DAY!


email: dont dis my ability AT riseup DOT net

Angry

So Canada voted in a Conservative Majority despite what would be best for the country so I went to drown my sorrows in one of the two bars I frequent in town. Upon arrival I was told that I had to go outside because my dog was not allowed. I tried explaining that she was a service dog, even producing her papers which were pushed aside and not even glanced at, and firmly told that it didn't matter that they can refuse service to anyone. I asked if they would say the same if I were blind to which they replied again "we can refuse service to anyone."

Having already bought a drink I went outside, but I went back in to ask when I could speak to the owner. They said I could speak to the manager tomorrow at 4. I plan to and if he does not understand the law I am contacting the state disability board and a civil rights lawyer. I have been to this bar many times with Sadie and do not understand why this time was a problem. To top it off there was another, non-service dog in the bar, but apparently that dog is a-ok (he said it's the only dog allowed in the bar).

Yes I cried. To deny my dog is to deny me. I may not have a visual disability, but I have one and I require a service dog to function "normally." To deny me a service because I require outside assistance is just as bad as not having a ramp for wheelchairs. So fark you Overtime in Clemson, SC. I'm going to fight for my right to frequent you then you can kiss my white butt because you will never get my business again.

My PTSD Dog

This post is brought to you by the anxiety attack that the Super PTSD dog Sadie interrupted last night.

So I am obviously still training my dog, but her medical training is all complete. She does amazing things for me (listed below), now if only I could get her to do the "little" things. LOL. She's a perfect example of a service dog, walking with me, sitting next to me, doing her medical duties, etc. But when not wearing her vest she doesn't always listen. *sigh* We're working on that.

I felt as though I should share her story with you as I love sharing her story. From scared abused dog who had to be carried into the yard to go to the bathroom to dog who walks proudly around campus when she has her vest on (without her vest I doubt she would).

She is a 3 year old abuse rescue American Pit Bull Terrier. Because she has PTSD and her momma has PTSD we got her a patch for her vest that says "PTSD DOG." :D Surprisingly I don't mind telling people that yes I do have PTSD, but I do get persnickity when they ask me how I got it. The patch on top of her back says "Service dog access required."

I originally just rescued her because I knew what an abused dog needed and I love pitties. But when she interrupted my first anxiety attack I knew that she may be able to help me in other ways with my PTSD/Bipolar/Depression. Here's what she did during my first and subsequent anxiety attacks: if I'm sitting or lying down she'll put her paws on my chest and paw at me until I make eye contact with her and start interacting with her. This brings me back to the present and out of whatever hell hole of the past I am stuck in. If I'm standing she paws at my legs and stands on her hind legs leaning on me (which she has been trained not to do) until again I start to interact with her - not just brush her off, but really solidly connect and interact with her. She knows when I'm about to have an anxiety attack (I don't know how, but she does) and she knows when I'm just going through the motions of interacting with her and when I'm really connecting with her and being pulled out of my head.

Since I realised she could do this, she has been taught to bark when it's time to take my meds, she nudges me in bed in the morning when my alarm goes off to get me to get out of bed at least to walk her which usually prevents me from staying in bed all day, and she comes out with me in public (we're still working on socialisation - that part takes about 6 months and she's strides ahead of where an abused dog should be, I've only had her since August). I feel like I can go so many more places now - I'm not scared to go out in public.

I ***HIGHLY*** recommend a service dog for people with PTSD. Here's a story of a PTSD dog. Let's just say I see my Sadie in there.

UPDATE: Here's Sadie's story on Stubbydog.org. And here's her complete background since she was rescued.

P.S. We went to the American Bully Kennel Club show on January 29th in Tampa. It was so fun being around all those pit bulls and pit bull lovers! Plus SADIE WON 1ST PLACE FOR BEST RESCUE:

I don't know what I'd do without her - she makes my life so much more liveable.

Score one for Disability Rights

Even a stopped clock is right twice a day and finally Congress did something right. (Well the Senate anyway.)

On September 11th the Senate passed S. 3406, the ADA Amendments Act of 2008. This is a big fucking deal for people with disabilities. Now I'm gonna ask you to send a short email to you reps and ask them to vote for it (it had 77 cosponsors in the Senate (including my own, Patty Murray, who I love, and Hillary Clinton) so hopefully that's some indication that it will easily be passed in the House as well). What is so great about this? It changes the language, it removes some of the worse paragraphs, it gives people with disabilites (more) legal recourse if discriminated against, and it changes the definition of disability as well as putting in writing (thank god-this is something that means a lot to me personally as someone *on* disability who is mostly functional on medication) that the determination of whether or not one has a disability is made without taking into account things that aid in helping the person to lead a "normal" life. Observe:

'(E)(i) The determination of whether an impairment substantially limits a major life activity shall be made without regard to the ameliorative effects of mitigating measures such as--

'(I) medication, medical supplies, equipment, or appliances, low-vision devices (which do not include ordinary eyeglasses or contact lenses), prosthetics including limbs and devices, hearing aids and cochlear implants or other implantable hearing devices, mobility devices, or oxygen therapy equipment and supplies;

This is important because the courts ruled in the past that there have been rulings that have said that if such assistive devices improve your life then, viola! you are no longer disabled as in the 1999 case Sutton v. United Airlines. My life is 10x better on medication and I'm continually scared of being kicked off of disability as a result which means no Medicaid and no medication. Whee. What a catch-22. I become almost fully functional with medication and then I am kicked off because I am only fully functional to fall back into my less then desirable state of functioning just to go back on SSI-D and medication. Whee again. And I'm not the only one who lives with this fear.

Back to the legal recourse. Many different types of disabilities were not included and were being discriminated against and not recognised by the courts under the current laws. Non-physical disabilities, i.e. the ones that most people think of when they hear the term 'disability' were generally discriminated against, because, well, if you can't see it it doesn't exist, right? Wrong. And this Bill is changing the laws to make sure that people like me are covered. If the government pays me disability why then am I not included in the ADA? Hmmmm.

In a statement, Nancy Zirkin, executive vice president of the Leadership Conference on Civil Rights, praised the bill's introduction: "The ADA Amendments Act is the most significant civil rights bill of the 110th Congress. This act will correct narrow court interpretations that have restricted ADA coverage in the workplace, and taken away coverage for people with diabetes, epilepsy, serious heart conditions, mental disabilities, and even cancer."

I am writing first as a HURRAH that this was passed for the 43 million people in the US living with a disability, but also to ask that you do contact your reps (whether you actually vote or not-I don't care and they don't know) because this bill needs to pass the House. This amendment needs to happen. For me. For the 43 million others and all those undiagnosed. For the people who are usually left behind when talk of civil rights is brought up.

(Oh and while you're at it you should add something about HR 676 single payer healthcare-then no one would have to worry about going without medical care or medication.)

Also, currently there are Disability Rights Activists blocking all the doors at McCain's Campaign Headquarters (follow the happenings through Twitter) What are they asking for? Housing! Call McCain headquarters at 703-297-8900 to tell them to get the housing platform to McCain!

Creepy

SSI just sent me a form for WA Power of Attorney and the WA Health Care Directive.

I know it shouldn't creep me out, since it's a good thing to have and there are people I trust far more then my family (like my partner) and just because I have one does not me I'm going to fall into a permanent vegetative state or anything. It's just part of the loads of paperwork that they are sending to everyone on SSI Disability who all got automatically enrolled in the state Chronic Care Management Program a few months back.

They also sent me my "plan" which is really weird since it's so obviously written to my doctors or potential caretakers and not me.
To whit:
BEH HEALTH: Take out for regular walks.

Uhhhhhhhhhh, what? Did they even talk to me? I told them I was going to school, so they should know that I get out of the house regularly. I told them I took a dance class so I was getting exercise at least 2 times a week. But there's also this weird thing about a pulmonary rehab referral, so I'm confused.

Anyway, I guess I should open up all those other large 'time sensitive' envelopes that they've been sending me. But first I have to find some way to be in a room with two people (me hermit) so they can witness me sign my forms. Weird.

ARGH!!!!!

Do you know how excruciating it is to figure out the multiplicity of a large system without knowing how to use excel? (I can get everything but the f*&&ing combin function to work.) I've spent the past 3 hours working on that 1. stupid. function. I could have been at a cookout with my math geek and his band. Who, incidentally, just told me that he thinks he knows how to do it so I could have saved myself all the spitting and swearing and had some fun as well. &*^^$$#$$&^*(*)I)_()_%^%#@@!!#%^&^&*()*()()(_)_)*(&%^$$#$@@!$@#!


And I didn't get the REU. I know I should have applied for more, and I wanted to, I was just overwhelmed by evil Moore method class that unknowingly all the deadlines passed me by. That's what happens when you're drowning in anxiety. I fucking love this disability, let me tell you.

Speaking of which, without including the price of my daily dosage of Lamictal (300 mg) for the bipolar, my Xanax, and my inhaler my running total for monthly meds is $645.92. Thank god for medicaid. (And I know that people moan and scream that they don't want socialised health care b/c they don't want to pay for that, but trust me when I say it's a hell of a lot cheaper then my going to the ER for a shot for an anxiety attack (which I only go in for after being unable to sleep or calm down for at least 2 days.) And that was at least once a month. Morons.

EDIT:
To supplement my bad lernin' I've been visiting this site and taking quizzes including US Capitals, presidents and countries of Asia, Africa, etc, etc. I also hold the record time for naming all the Jane Austen novels.

This is kind of cool: why anxiety means homework goes unfinished

My kick-ass rad fem therapist today and I were talking about (what else) the overwhelming anxiety I am having from my proofs class which is coupled with the fact that I went to see him today to ask for help and he just stared at me. (You should listen to him when people who are doing well in the class go in for help, he's super-helpful. All other C students like me say the same thing: when you ask him something he stares at you, but he'll help the people who all ready get it. Being one of 3 resources for the class (another one being his crappy definitions and the third being me, who can't figure out the definitions and is therefore struggling to stay afloat) this SUCKS.)

ANyway, back to my story. There is, of course, some PTSD triggers thrown in there as well. So much about this mirrors being in a house with my abusive mom: having to be somewhere I hate while being helpless and having no one to turn to (b/c yes I *can* get a tutor, but all the math fellows either a) tell me they did horribly at the class, b) took it from someone else and every prof covers different material, or c) blocked it out of their memory), and then there's the constant replays of my mom's voice telling me I'm stupid and a litany of other similar things. HOORAY! Isn't my head a fun place to be these days? My best friend begged me to leave the class (we have similar mental health (dis)Abilities and are always watching out for one another, but I can't. I have 2 friggin' quarters to go and I will have that BS in my hands. Can't change now, don't want to either. Like math, want to continue doing math for a very very long time. Must push through even though b/c of this class they've upped my Xanax AND my Lamictal. Heh. (and I had to double my xanax dose yesterday b/c one just didn't work)

SO, here's the cool part. My therapist likes to explain how these things work inside your brain by modeling it for me. I really like this. SO today she showed me how anxiety and PTSD affect the entire brain, not just how PTSD traps you in your midbrain (and how the techniques we use like EMDR try to put these things into words instead of just emotions which move them out of your midbrain and make them something that is easier to deal with and not an automatic reaction.)

She held out her hand in a closed fist: this is your brain (I know you probably all pictured the frying pan, but shake it out), she then opened her fist and pointed to the middle of her hand and said "this is your amygdala" and then to her thumb and said "this is your hypothalamus" and re-closed her hand. She then said "this is normally how your brain is, but when you get activated, or in a manic state, or in a mixed state (which happens to me when I get activates), or have anxiety this happens" and she opened her hand (which makes sense since in PTSD the midbrain takes over) "and your neocortex is unable to function properly."

I all ready knew that anxiety meant that I was not going to get anything done, but it's nice to have an idea of *why* nothing gets done. Although I'm sure if I had a more technical explanation I would just be confused.

Finals start the 17th, we don't have a final in this class, just a 2 hour class period of, yay, proofs that Wednesday. Everyone keep their fingers crossed that I don't have a nuclear meltdown before then, because it really feels like I am heading for a major one and I really REALLY hate the idea of having one because of something that I put myself through.

Anxiety attack in math class today

I almost started screaming at someone in class today (do you *really* need to prove 3 things in one class when you were the one who proved the most proofs for the "first 3rd". You only raise the bar for the rest of us who were ecstatic (and I'm not the only one) of proving 3 in the last period, now we'll have to do more. We're 2 weeks in and I have none, but then again every time I try to do a proof I have an anxiety attack.) But (thankfully) instead I had a *quiet* anxiety attack and cried for the last 30 minutes of my class. It was AWESOME.

So here's the email I just shot off to my advocate at disability resources:

I have a math class in which my anxiety has got progressively worse in as
the quarter goes on. It's Math 312, Intro to Proofs via Elementary
Analysis. The style of the class is "teach yourself." We are given
definitions and sometimes theorems that, frankly, I do not find
illuminating or helpful and I do not find the prof helpful either. We're
not allowed to use any other resources, other people, books, etc.

Prior to today I was only having anxiety attacks every time I attempted to
do a proof, but today I had an anxiety attack during class. I am having a
horrible time and this class has just made my depression and my anxiety
worse. I can't get myself to school sometimes because of this class. And
I know it's going to get worse. I don't think I will be able to make it
through this class, but it's a requirement.

Is there anything you can do? I have to pass this class, but I don't
think I'll survive this and with only 2 quarters left, and full with the
rest of my requirements I don't think I'll be able to fit it anywhere else
(and everyone teaches the class this way).

Need I say again that I think this class is incredibly unfair to people with anxiety disorders (like me).

Oh and for good news, 48/50 on my Abstract Algebra homework (both points lost were ridiculous, they were things I knew that I forgot to put into my proof. ARGH!) Pure mathematics ROCKS!

Looks like it's time for a med update

I've had insomnia for the past 2/3 weeks, bouts of depression and mania, and it is seriously interfering with school. I got 3 1/2 hours of sleep last night and I have a test tomorrow and can't fall asleep now and just want to cry. I want to go to the emergency room as I can't get in to see my doc during office hours until next week b/c they'll give me some valium and I'll be able to sleep at the very least which will make everything SO much more bearable. It'll just screw up my school stuff, and I really can't afford that, but if I don't get any sleep tonight I will definitely have to go tomorrow or Thursday b/c I don't think I could wait for Thursday, and it would be nice to *actually* be able to hang out with my partner.

I hate December

So if you read my last substantial post you know that I have been having a really hard time this month. And during my 16 hour layover (my flight got cancelled and they rescheduled it for 6 the next morning, blech. they had no pilots, isn't that great.) I was thinking and December has always been a bad month. Usually that means there's a trauma anniversary of some kind, and all I can come up with is stuff about having to spend a lot of time with my mother due to xmas break and all. And now I'm here, which I always dread. If my grandmothers weren't so old and in such poor shape I wouldn't come home at all. I just can't deal with my mother. It makes sense though, because I've been having my "mom tapes" playing constantly telling me I'm worthless. It didn't help that I had asshole prof who acted like I was using my migraines and disability to not take quizzes and a test. I got 100% on everything I turned in (no late homework, even for those of us who have documented disabilities and work with disAbility resources. And I got a B- in the class, which I think is bullshit. Once I have my hands on the final I will be appealing.) even though I ALWAYS had it done by the due date.

I'm just a ball of PTSD related depression and anxiety and I have been all month. I caught myself thinking that I should just end it with the first person I've ever loved. It's been that bad. Now that I'm in Chicago I just want to leave. Waiting for the plane filled me with anxiety and just made me want to ditch it and go home. I've been here 30 minutes and I'm crying.

I'll be back hopefully in a few weeks. I'm just overwhelmed with PTSD-related issues right now.

I hope you're all well and enjoy the holiday season (and for you students/profs I hope you enjoy your break.) I need to go now.

I FUCKING HATE DECEMBER (and can't wait until I can spend every December in my little repopulated ghost town in southwest Texas. Nothing gets to me there, I'm just filled with a sense of peace and joy at being alive. After I pay off my student loans I'll probably buy some land and move there for good. people survive down there by working as little as 2 nights a week (those that own land anyway.)

*sigh*

Dear body:

I don't know what I've done, but can you please stop it with the constant pain. I take care of you and you reward me with seemingly endless migraines and muscle spasms. Also my tendonitis and arthritis acting up and the fact that I am in extreme pain if I don't wear a bra 24-7. I am really sick of spending my days in pain and my free time incapacitated and unable to do anything. I'm begging you. Please.

Lost Clown

Dear TV writers:

I hate you. I really really REALLY do. How would you like it if I made up fucked up stuff about you and broadcast it all of the world and it made people fear and loathe you before they even know who you are? Really, you think that would be unjust bullshit? Well then STOP FUCKING DOING IT TO US. Don't know what I'm talking about? Here:

Criminal Minds: 2 episodes into the season and 2, not 1, but 2, bad guys who are "borderline." Never mind the fact that I didn't see anything that was really borderline about either of them. So what's your fucking problem? Do you just think that because Borderline is so stigmatised and so unknown that you can pick on us and say that we're crazy scary people who (and I *almost* quote) 'believe that all relationships revolve around us'? Seriously? So yeah, we do do that to some extent, but first of all so does everyone else, and second of all I've never met or heard of anyone who's borderline kidnapping and killing people because they think that those people are there just for them. For fuck's sake, it would have definitely made the news since we borderlines are the big bads of the mental health world. BOO!

So do I get to look forward to an entire season of this bullshit where every creep who is a murderer is talked about as borderline? Every single one? You know, if people who are borderline would be less scared to talk about it openly (and with bullshit like this who can blame them for not wanting to talk openly) we might actually be less stigmatised, but even without you moron writers putting this bullshit into your show we all ready have to deal with therapists who refuse to work with us, people who don't know how to treat us, and people who are scared or freak out when they find out we have a "personality disorder."

I mean, ok, so if you only labelled one of them borderline (because it seems that almost every killer on your show has some mental health disorder which, you know, it seems like maybe there could lets say, HALF of them who were "healthy" so people will stop blaming people with mental health problems for anything horrible that happens in society*) I could somewhat deal with that (if he did indeed *act* as though he was borderline) because, yeah, I'll give you that anyone can be a killer, even a borderline. But the fact that it has come up two weeks in a row and used as a way to make sure everyone knows that this guy is super crazy and that borderlines are likely to carve you up into bits and eat your innards, well that makes me just a little bit pissy.

SO will you please stop kicking on people who are among the most feared and reviled in the mental health world (I mean, how appropriate is it that docs can refuse to treat us. What if you went in for a check up and the doc refused to treat you because they don't like people who have the flu? huh? Feels shitty, don't it.) So please pull your heads out of your asses and stop saying that every damn bad guy on your show is borderline. Because if you knew even a little itsy bit about it, you would know that we're far more likely to hurt ourselves then to hurt others. Oh and women have it more often then men.

Sincerley,
One seriously pissed off clown with borderline personality disorder.

*Did you know that in psychological tests done on rapists and pedophiles, doctors could find no difference at all between the psychological make-up of a 'healthy' person and a convicted sexual predator. Interesting, huh.



To my fellow BPD sufferers, a plea:

I want more people with BPD/ERD to stand up and talk about it. I'm sick of getting kicked around because of fear of the unknown. There are more of us who have been diagnosed borderline then there are diagnosed bipolar or schizophrenic! Those 2 conditions aren't nearly as scary or as picked on as borderline. I can't get you to do anything, but I just hope that I am not alone in bringing this stuff up. If you ever feel moved to talk about it, to a friend, on a blog, anywhere, and are scared just remember: I'll always be here for you. You have my unconditional support. We need to do this together.

When past mental health diagnoses become a weapon

I've been trying to write this post for some time, but it's really hard to exactly express what I'm feeling, so I'll just list it: anger (and a whole lot of it), disgust, fear, anger, incredulity, outrage, shock, sadness, and more (righteous) anger.

A woman, Fran Lyon, whose website can be found here detailing what's going on, who was diagnosed with Borderline Personality Disorder when she was a teen (which is ridiculous b/c you're not supposed to be diagnosed with a personality disorder until you're over 18) is being threatened with having her baby taken away from her, 7 years after her diagnosis, and 6 years since her therapist has said she has recovered from her symptoms. (For a breakdown of BPD look to my old post found here. Read this first if you know little or nothing about BPD/ERD.)

From Writhe Safely (link at bottom):
A man rapes a woman, her resulting PTSD is misdiagnosed as Borderline Personality Disorder.

Women who have been raped are traumatized and eligible for the non-punishing dx of PTSD, which sits on AXIS I of treatable mental illness.

BPD is an AXIS II diagnosis, the AXIS referring to disorders of the personality, that are by definition lifelong and untreatable.

Daily Mail article (Reproduced in full here with my own emphasis added).
The daughter of teachers and with a glittering academic future, Fran was delighted when she became pregnant. But social services discovered the illness she thought she'd put behind her - and will confiscate her daughter when she is born...

Fran Lyon is due to give birth to her first child - a daughter she has already named Molly - on January 3. But the prospect, far from being one of joyous anticipation, fills her with a dread that keeps her awake at night.

It's not because Fran doesn't want the child. She does. Desperately. And not because she is frightened of the pain of labour. She is prepared for that.

It is what happens afterwards that fuels Fran's anxiety. And there can be no preparation for that pain.

For within 30 minutes of birth, barring any medical complications, Molly will be handed by doctors to social workers. They have instructions to take away Fran's newborn baby and place her in foster care.

The 22-year-old will then be transferred from the maternity wing to a gynaecological ward, because Northumberland Council has decided that Fran - who has never harmed anyone in her life - is potentially a risk to other mothers and their babies.

Fran has no idea if she will be able to touch her baby, even for a minute, before leaving hospital alone, or if she will ever get her daughter back. Her biggest fear is that she won't, and that Molly will be put up for adoption.

'It is incredibly upsetting not knowing if I will be allowed even to hold my baby,' says Fran, a charity worker. 'Until social services became involved in my life, I was having a normal pregnancy and was full of excitement.

'They have taken away what should be the most precious time in my life - and I will never get that back. I'm already in love with my baby. I can feel her moving, I talk to her. I've bought her baby books and clothes. You just can't undo that attachment.'

Fran is an intelligent and articulate woman. She has nine A- starred GCSEs, five grade A A-levels and is in the third year of a neuroscience degree at Edinburgh University - which she is completing at home in Hexham, Northumberland.

However, what concerns Hexham Children's Services, which is part of Northumberland Council, is Fran's medical history.

Having had a difficult relationship with her parents, who are teachers in good state schools, from the age of 15, she started selfharming. Fran spent three years - on and off - in psychiatric hospitals.

Her problems appear to have begun when she was raped by an acquaintance at the age of 14. Diagnosed with a borderline personality disorder, she was discharged from a therapeutic facility in 2002, where she had spent 13 months, and spent nine months as an outpatient.

Today, she needs no medication and, according to her former psychiatrist, Dr Stella Newrith, 'has made a significant recovery to the point where her difficulties are indistinguishable from those of much of the general population'.

In a letter to Northumberland Council, Dr Newrith, who treated Fran for a year when she was 16 and has known her for many years, stated: 'There has never been any clinical evidence to suggest that Fran would put herself or others at risk, and there is certainly no evidence to suggest she would put a child at risk of emotional, physical or sexual harm.'

Furthermore, she said: 'I would view the removal of Fran's baby as an extraordinarily heavy-handed gesture. It is also my professional opinion that doing so would be an infringement of Fran's human rights, as it would be much the same as removing a child from someone from the general population.'

Yet on August 16, a child protection case conference recommended that Fran's baby should be taken away at birth - a decision based in part on the contents of a letter from consultant paediatrician Dr Martin Ward Platt, who has never met Fran and could not be present at the meeting.

In his letter, Dr Ward Platt states that 'even in the absence of psychological assessment, if the professionals were concerned on the evidence available that [this woman] probably does fabricate or induce illness, there would be no option but to put the baby into foster care at birth pending a post-natal forensic psychological assessment'.

However, he warned that it was necessary first to establish as far as possible whether or not Fran does suffer from this illness - something Fran claims they have failed to do.

Fran has never been diagnosed with this condition, yet she has nevertheless been deemed by Northumberland Council as someone likely to suffer from Munchausen's Syndrome by Proxy, a controversial and unproven condition in which a parent - usually the mother - makes up or induces an illness in her child to draw attention to herself.

And so, unless a judicial review next week rules in Fran's favour, her baby Molly will almost certainly be taken away at birth.

'I can understand why they might have concerns about my past, but the speed with which they have come to this conclusion, despite the evidence of my own psychiatrist, is terrifying,' she says.

'I was at the case conference and it lasted just ten minutes.

'This letter from Dr Ward Platt was given to me just five minutes before the meeting started, and when it was produced, the chairman said there was no point - in the light of what this letter stated - even considering the other evidence which I wanted to present, which was letters of support from psychiatrists.

'I think they simply panicked, and when people panic they make, in my opinion, bad judgments. I left that meeting numb with shock. I'd had absolutely no time to digest the letter or argue my case, and I was so horrified at what they'd said that I just couldn't even begin to respond to it.

'I have never harmed anyone in my life. I have no criminal convictions. I believe I can be a good mother to Molly - but they are not even prepared to give me a chance to prove that.

'I have offered to stay in a mother and baby unit after Molly's birth for as long as they want, and to be monitored. I would be prepared to stay there for 18 years if it meant I could be with my baby. But that, it seems, is not even an option.'

Fran's case is far from unusual. Two thousands babies under one year old were taken from their parents last year by social services - three times the number ten years ago. Critics believe councils are doing this to help meet government adoption 'targets'.

Liberal Democrat MP John Hemming, chairman of the Justice for Families campaign group, certainly thinks so.

'How can it be in the child's best interests to take a baby away from its mother at birth? The reason why they do it is because it's much harder to take away a baby the longer it spends with its mother, and a healthy newborn baby is so much easier to find adoptive parents for.

'It is estimated that 97 per cent of babies taken away from their mothers at birth, on the basis that the mothers are "capable of emotional abuse", are never returned to them - and that is simply scandalous.

'Of course, there are cases where it is right to do so, but the whole public family law system is corrupt because of the secrecy which surrounds it. Decisions are based on opinion and conjecture, rather than fact and evidence.

'What does Fran's case tell us? That no woman who has been raped or had mental health problems can be allowed to have a baby, even years later?

'What could be more traumatic than for a mother to have her baby taken away at birth? It's monstrous. That, in itself, can cause mental health problems, which is then used by social services against the mother as a reason not to return the baby. It becomes a self-fulfilling prophesy.

'There has been a massive increase in younger babies being taken into care, before there is even any evidence of harm - and you have to ask why that is.'

Despite her own troubled past, Fran Lyon is convinced she can be a good parent, and is desperate to prove that. From the start, she has been open and honest with social workers about her medical history, but she feels this has been used against her.

Although she describes her childhood as 'difficult', she refuses to elaborate, other than to say that she is close to her mother and younger brother, but has no contact with her father.

The catalyst for her severe mental health problems was, she says, the rape she suffered when she was 14.

She told police that she was attacked while working as a Saturday volunteer in a charity shop in Northampton, when the shop's founder - a middle-aged man - drove her to an empty warehouse supposedly to pick up supplies for the shop.

When Fran reported the rape, he was interviewed by police. Three more women claiming they, too, had been attacked came forward and agreed to testify against him. However, in 2001 the man killed himself before the Crown Prosecution Service could decide whether to proceed.

'After the rape, I became clinically depressed,' says Fran. 'I lost a huge amount of weight and was admitted to a psychiatric hospital after trying to kill myself with an overdose of tablets. It wasn't a cry for help; I wanted to die because of what he had done to me.'

She spent the next three years, on and off, in residential psychiatric hospitals in Oxford, Nottingham and London after being diagnosed with a borderline personality disorder, in her case characterised by self-harming, instability and suicidal tendencies.

For the final 13 months, Fran went to a therapeutic residential clinic, where she attended individual psychotherapy sessions and group analysis before being discharged as an outpatient.

By the time she was 18, she appeared to have put her problems behind her.

She started to flourish, taking five A-levels at Orpington College in Kent and applying to study neuroscience at Edinburgh University.

At the same time, she worked for two mental health charities, Borderline and Personality Plus. It was through that job, two years ago, that she met the man who is the father of Molly.

'Of course, I was worried when I fell pregnant. I wondered how we would cope as a couple, because we weren't living together,' says Fran.

'But once that wore off, I was excited. I would go shopping with my mum to baby departments, buying books and looking at prams.'

But a few weeks ago, all normality ended. Social services suddenly became involved when Fran phoned the police after what she describes as a 'disturbing incident' with her partner. Fran's relationship with him ended immediately.

'The case was referred to social services and I was interviewed by two social workers, who said from the beginning that they would have to look at the whole family, not just one person in isolation,' says Fran.

'At that first meeting, they asked about my concerns regarding the baby's father, but then it became clear through their questions that their investigation was centred on me. I have never made a secret of my mental health problems. I felt I had nothing to hide.'

Fran was co- operative, she says, because she naively thought children's services would offer her help and support. She was stunned when she received a letter informing her that a child protection case conference would be held on August 16.

'That's when I became frightened and thought for the first time: "Are they going to take my baby away from me?"

'I couldn't believe how everything had happened so quickly. When you are up against a big system such as social services, it is very easy to feel overrun and overwhelmed.'

Realising the seriousness of the situation, Fran instructed a solicitor and contacted her former psychiatrist, Dr Stella Newrith, who offered her full support.

A second psychiatrist, who Fran knew through her charity work, offered a character reference stating: 'I have no doubt that her diligence and capacity, particularly in dealing with complex emotional situations, will stand her in good stead for the rigours of parenthood.'

Yet these testimonials, Fran says, were never even read out at the conference after Dr Ward Platt's letter was produced.

Northumberland Council insists that two highly experienced doctors - another consultant paediatrician and a medical consultant - attended the case conference.

Neither they, nor anyone else present - including Fran solicitor - made any objection. Feeling stunned and intimidated by what she had heard, she felt unable to speak out.

Everything she wanted to say will now be heard - with the help of a new solicitor who specialises in such cases - at appeal.

According to MP John Hemming, Fran should win her case; but there is no guarantee that she will. Both he and Fran are particularly concerned that last week social workers contacted the psychiatrist who provided a character reference for Fran. They believe this was done with the intention of 'pressurising' the witness into withdrawing his support, and undermining Fran's appeal.

It was seemingly suggested by a social worker to the doctor in question that Fran had given incorrect details about her health to hospital staff: in short, doubt was cast on the reality of an ectopic pregnancy Fran suffered on Christmas Eve two years ago.

'Is it ethical for social workers to go behind my back and speak to my witnesses, discussing my private confidential medical history and suggesting to them that I might have made things up?' says Fran.

'I did have an ectopic pregnancy, and I have the scars to prove that I had abdominal surgery.' Mr Hemming goes further, describing such behaviour as akin to witness nobbling. He also claims it is not uncommon for social workers to pressurise witnesses - a punishable practice in the criminal courts.

'There is a culture in which the end is seen to justify the means, and sometimes the means employed would not be tolerated in any other court of law,' he says. 'Yet if anyone tries to speak out, they are guilty of contempt of court. The whole family court system, because of the secrecy which surrounds it, is vulnerable to bad practice. Social workers are under pressure not to lose cases.' Northumberland Council, while legally prevented from speaking about individual cases, insists there is nothing sinister in their actions.

A spokeswoman said it was the court which would make the ultimate decision, after hearing legal representation from both sides. 'Safeguarding children is our top priority,' said a spokeswoman. 'We speak to all sides without bias or pressure. 'We would welcome a review of the family court arrangements, and support transparency, as long as this is in the best interests of the children.

'Safeguarding arrangements have been praised as good following a rigorous inspection by a number of Government departments. It was specifically noted that "good action was taken to enable parents to keep their children safe in the home and the community. Our duty to safeguard children is our only motivation, and we strive to keep children with their families wherever possible, or extended families if that is not possible.

'We do not have numerical targets for adoption; nor have we received any financial rewards in relation to adoption figures.'

As for Fran, the final four months of her pregnancy are filled with stress and uncertainty, and the nagging terror that her worst nightmare will become a reality and her baby daughter will be snatched away from her. 'Some days I feel positive,' she says quietly.

'But others I feel totally overwhelmed. All I am asking for is a chance to prove that I will be a good mother.'

Sadly, that wish may not be granted her.

Now I was diagnosed as BPD a few years ago, not by my therapist who believes that I only have severe PTSD whose symptoms mimic those of BPD, but by a psychiatrist I had to see in order to get meds. Now in my disability file held by the government I will always be labeled as BPD. (Thanks, doc.) As Fran's case shows, this can be very dangerous. Now I do not plan on having children, but my friends not only trust me with their children, but encourage us to spend a lot of time together (mostly b/c I seem to be everyone's favourite crazy auntie). The thought that because I have been diagnosed with BPD that I should be a danger to children is ridiculous. BPD is characterised by self-harm, not with harming others. I wish I could express more of how I feel about this situation, but I am just too overwhelmed with disgust and anger to be eloquent.

In the News:
Journal Live article
Telegraph article
Sky News article

From the blogosphere:
The Roadkill Diaries' Tony Blair's Britain
Writhe Safely's How Psychiatry Blames the Victim
Uncool's Fran Lyon (also a hat tip to Lina for making me aware of the situation)
The Trouble with Spikol's Horrifying Violation of Human Rights
*NEW* S511's Link Roundup

I will be updating this as more blogs and news items appear, and I will have another blog when the court decision is made. I'm hoping for the best, but I'm not holding my breath since society seems to think that anyone diagnosed with a mental health disorder is less then human.