A Maze Inside a Minefield: Relationships and BPD

Since I first started reading Sandy's blog I have not been able to bring myself away. She has a way with words, a way with sharing the nitty gritty of life and a way of describing disability. I took this posting from her blog because it is just a fantastic introduction to dealing with a relationship with yourself as well as another. For our partners it is a huge task for them to be both a carer and a partner, and it is hard for them to manage both roles in a way that meets our needs, and their own! Her post 'A Maze Inside a Minefield: Relationships and BPD' is a beautiful view into her life as trying to work her relationship in with a mental illness that seems to run everything and make everything more difficult.

Sandy

Being in a committed relationship can be challenging all on its own. When you throw a mental illness into the mix, overcoming these challenges can seem impossible. Mental illness magnifies the weak points, stretches boundaries, intensifies emotions, and leaves both of us wondering just what the hell went wrong. (My husband calls it a maze inside a minefield.)

I am trying to earn back my husband’s trust after my last suicide attempt. Since then, everything has been different. I often feel like I’m being treated like a mental patient instead of a partner, and my husband thinks he’s just being supportive and trying to give me breaks. I think he may have gotten used to the caretaker role when I was at my sickest, and now neither one of us knows how to get back to that place before it happened.

Neither one of us now knows how to just be with each other anymore. And that’s a problem.

It’s hard for me to separate what is my mental illness and what is not. How do I know when I’m overreacting because of my BPD, or whether my feelings are valid given the situation? What boundaries are appropriate between us? I feel bad that he doesn’t always know what will help me, and sometimes when he tries it backfires. He is supportive and knows a lot about mental illness, but it doesn’t always make things any easier for us.

And just because I have BPD and all that that entails (black and white thinking, intense emotions, fear of attachment) does not mean I cannot have my own expectations when it comes to my relationship. Everything does not have to be blamed on my mental illness, right?

This doesn’t mean I get a free pass to go crazy, either. My husband gets to have expectations of his own, which means I get to keep working hard in recovery and keep my symptoms in check.

Because that’s what you do when you love someone, you strive to be better.

I don’t have all the answers. All we can do is keep working toward having a better relationship. While the challenges won’t go away, it is good to remember that challenges are a normal part of every relationship, whether or not someone has a mental illness. What matters is how you choose to deal with them.

First Flight Crew - Disability and Dance

Hi everyone,

I couldn't resist but to share this with you as I think it is quite an amazing and fabulous thing to recognise. The First Flight Crew are a group of hip hoppers with disability. The crew is made up of seven unique individuals with so much talent in all things entertainment. The crew picture themselves as representing people with disability whilst also showing off their hip hop skills to a wide public audience.

The group was formed in late 2008 by the Accessible Arts Creative Programs Coordinator, Alison Richardson and Club Wild. The offer of four workshops grew to two fabulous tracks of dance with an accompanying music video clip. The tracks included 'The Wild Ones' and 'Music Makes Me Happy'.

After these great new performances the group were offered the opportunity to perform at the Beach Road Hotel as part of a hip hop night with interstate and international artists.

In 2009 most of the orginal group returned (with some newbies) to take part if a song creation workshop with Morganics, creating their first original song called Funky Guitar Style Noises. The Group, then called the Funkeze is now called the First Flight Crew.

They have some fabulous videos and great bios on the group members on their website.

What I love about this group is the fact that these individuals have not been limited by their disability and have really shown the world what they are made of through creative dance and entertainment. Their story is all about overcoming a challenge but at the same time representing people with disability in creative arts.

I always keep my eyes peeled for amazing stories of individuals and groups. If I've missed anything that should be mentioned or you have a story to tell, let me know! It helps to share your experiences because you will find that they are shared by many. Email prmedia@ideas.org.au to share your story on the blog.

Introducing Guest Blogger - Sandy

I came across the wonderful words of Sandy when I was looking for some inspiration and great experience for this blog. Sandy has her own blog 'A Glass Half Shattered' and the experiences she talks about are like nothing that I have read before. The way that she describes her experiences with Borderline Personality Disorder are really quite extraordinary. I was not aware that one could really portray such emotions and live their experience through words. I promptly invited her to come across to this blog for a special posting, and I think that the readers will not be disapointed. I'd like to introduce you to Sandy and suggest that you go and check out her blog yourself!

I started writing A Glass Half Shattered because I wanted to humanize mental illness and help shatter the stigma that surrounds it. That is why I chose to use my real name and face on my blog, even though my sister and mother don’t always like what I have to say.


Writing is a way to help me cope with having borderline personality disorder (BPD). Putting my thoughts down in my blog helps keep them from getting lost inside my head. When I am anxious or my mind is racing, writing always helps to calm me down. I believe everyone needs a positive outlet when it comes to managing this disorder. Writing definitely helps to keep me away from the negative ones.

I was diagnosed with BPD this year, following years of misdiagnosis and repeated hospitalizations for depression and suicide attempts. I spent years self-harming, self-medicating with alcohol and drugs, and trapped in the cycles of anorexia and bulimia. I often dissociated and was disconnected from my feelings. I would rather feel nothing than deal with the traumas from my past. Unfortunately, that meant I was shut off from the good feelings as well.


I had no stable sense of identity, which left me empty inside. Since I had no idea who I was, other people became my mirror on how to be. My relationships were often co-dependent, as I feared abandonment and being alone.

Dialectical Behavioral Therapy (DBT), a new treatment for BPD developed by Dr. Marsha Linehan, has changed all that. DBT helps me learn to tolerate distress, regulate my emotions, and have healthier interactions with other people. So far, it’s working. The urges to self-sabotage through drinking, self-harm, and eating disorders have lessened and been replaced with skills to help me manage my life.

I am now a wife and mother and have a stable marriage and career as a paralegal. While I still have days where I dissociate and want nothing to do with myself, things are getting better. I believe recovery is a process, not a place. I am slowly re-connecting to my feelings and myself, which is helping me better connect to my family. Attachment, which has always been hard for me, is a risk I am starting to take. I am also starting to form my own identity and am becoming more assertive in expressing my true self.

I believe that a BPD diagnosis does not have to ruin your life. Sure there are the Glen-Close-in-Fatal-Attraction stereotypes, the Girl, Interrupted craze, and doctors who throw up their hands at hearing the word “borderline.” But we can overcome these stigmas by telling the truth about what it is really like to have BPD. I believe all of us have a story about what it is like to develop, live with, and recover from mental illness, and those stories need to be told. It is the only way to shatter the stigma often associated with these illnesses, and it just may help inspire some people along the way.

We Welcome Diana Palmer Back From Her Churchill Fellowship Research Trip

Diana has returned from her trip around for her Blakeney Millar Churchill Fellowship and wow does she have a lot to share with us about accessibility. Turns out Access Aware and IDEAS will be doing some big planning to get on top of the new trends and ideas around accessibility and helping people with disability.

It's amazing how technology can change the way that communication is managed with others particularly in regards to giving it to those that need it. All these new gadgets and gidgets that can help to create a togetherness through an 'authentic' communication source (such as our IPhone or IPad). 

Diana's comments around accessibility were that countries are still striving to achieve it, there are so many things that need to be considered, monitored and built upon before a street can even be accessible to all. It's a process of failure after failure until you reach upon a successful option. And often this becomes less practical as the world turns another year older.

I know what you are probably thinking, are we ever going to get there?!? All these countries with all their different finances, all their different technologies and we still haven't found an answer.

Stay positive Australia because at least some of us are trying. We will get closer, it just takes people like us to remind certain people to get going!!! 

The Challenges and Achievements of Dyslexia

Quite a bit of conversation has revolved around Dyslexia and the great impact it has on an individual, in particular a person who is striving to achieve an education. Dyslexia is defined by difficulties with reading, language and words for no apparent reason. People with Dyslexia have problems with spelling, comprehension, reading and identification of words. I would like to raise awareness that Dyslexia is NOT a sign of low intelligence. In fact it is quite the opposite.

I put forward the challenge for every child growing up, taking homework home to do and finishing tasks in class. Writing is the key format for testing the success of children. For people with Dyslexia this is a really big issue. I remember in school children picking on other children because they had to use other coloured paper or coloured reading glasses. A close friend of mine still continues to be forgotten in her studies and finds it really hard without the appropriate support to be successful in written assignments. She knows her stuff, it's just hard to get that on to paper.

Something that really should be recognised by everyone is that when a person is handed a task of writing something or spelling etc, the task is much greater. If we measure the challenge of this task against a measure of accomplishment, the level of accomplishment for these individuals is much greater then your Joe Blogs. Imagine if the task was to write a novel....one can not measure the success of a person with Dyslexia against an author without. Their ability to accomplish and complete a task which is of their greatest difficulty is so fabulous and I think that we should recognise the greatness of these successes by recognising every one of their abilities.

Simply Beautiful

For people that haven't taken a dive into the industry of fashion for people with disability, I surely advise that you do. Unfortunately surfing the fashion waves in Australia seems to be a little limited. America in particular offers a massive range of glamour and style designed directly for the needs of people with disability, no matter really what those needs may be. These specialised options may seem to divide the normal fashion industry and the fashion industry for disability, but really these options are just that: Options. They are designed to be the most comfortable, supportive and fitting, while also treasuring the bim bam bang of fashion.

One particular magazine sets a sparkle in my eye for it's uniqueness and creative light! Readers I would like to introduce you to the CHLOE Magazine, packed full of ...well everything. This fantastic specialty disability magazine is a magazine for women with disability and written by women with disability, which is a fact that I just think is fantastic.

The magazine covers a range of topics that appeal to a combination of women in general and specifically to women with disabilities. Topics include but are not limited to everyday life, travel, beauty, modelling, entertainment and arts, relationships, health and lifestyle, and even some content for the kiddies.

If only the magazine was in Australia! Unfortunately fabuolous Chole Magazine is based in USA, but it's still ripe for a read.

Another beauty icon of note is the glamorous Tiffiny in her blog BeautyAbility. Based in Minneapolis her blog is mostly about fashion. She is a writer, so no guesses that her words are great to read.

Perhaps I am not aware of our Aussie example of such great icons of beauty and fashion, perhaps my readers can enlighten me? But where's the juicy Aussie beauty mag fo us? Come on Australia, WE ARE HERE!

Have a top weekend,

Alyssa

Wishes and Daydreams

Rich Fabend

June is the month for high school graduation in the States. Both of my nurses have children graduating from high school this year. My primary nurse has been with me for almost 11 years now. Her children are almost like grandchildren to my wife and me. It is her son Devin who's graduating. When he was young we used to play together. Over the years he has done work around our house, has stayed with me overnight when my wife was away (we call it Adult Sitting) and I've watched him grow up. He is a fine young man, as well as a good soccer player and I've seen him play a number of times. Devin will be going into the United States Navy, after graduation, and will train to be corpsman.

I'm envious! He's young and I'm old. He's got his life ahead of him; most of mine is behind me. He's fit and I am not. I want to be him, young, healthy, virile with so much to look forward to. Just the other night I was thinking it is too bad life doesn’t begin at old age and go backward to childhood. However, wishing and daydreaming isn't going to change my situation. But what it does do is help me look at my life and put things in perspective. People come and go every day and little changes in the grand scheme of things. All this is wishful thinking, I guess, but the reality is only the earth goes on. It reminds me of part of the Serenity Poem which was stuck on a bulletin board in the kitchen at my best friend’s house.

God grant me the serenity


to accept the things I cannot change;


courage to change the things I can;

and wisdom to know the difference.                         

Reinhold Niebuhr


So, all things considered, what is the lesson to be learned? Deal in reality, enjoy your life as it is, change what you can and take time each day to smell the roses. We are not here very long so we should make the best of our situation.

Opportunities for Living

Emma Crees

I was recently asked to take part in a survey which is being conducted on behalf of the government (I think) called The Life Opportunities Survey. My understanding is it’s a new ongoing thing which started last year. It’s designed to “help shape Britain today or tomorrow” or at least the front of the leaflet I have tells me that’s what I’ve been selected to do. They selected 100 thousand some odd households at random and I came up. Well, my house did but as I live alone it’s much of a muchness. So I wasn’t selected to give the “crip perspective” which made me very happy. Until at the end of the survey when I was told that some people get asked to re do the survey a year later to see how things have changed. Which is fine. However it’s pretty much guaranteed that I’ll get asked again. Because I’m disabled. I don’t mind at all, but I just knew that the “crip perspective” was going to come into it somewhere!!

They sent a man round to my house and I spent an hour answering questions. Apparently the more people you live with the longer it takes so I’m glad I’m just me from that point of view! They gave you a big folder full of cards with numbered answers then for each question you’re told which to look at and have to give the number(s) which apply to you.

First you give general information like your date of birth etc. Census type stuff, basically. Then you move onto the questions specific to the survey. I believe based on your answers they filter a bit – the “if no, move to part F” type thing you see on paper forms although this was a guy with a laptop.

So he said to me “now, this might seem to be a strange question based on your condition” (he meant the fact I was sat in front of him in a wheelchair) “but how would you rate your general health?” The options were very good, good, then three others I can’t remember – a neutral one and two negative ones.

I said very good. And my health is very good in my opinion.

He didn’t say anything but based on the way he worded the question it was obvious that he considered my health to be bad. Or perhaps it would be fairer to say he expected me to use a negative choice.

I’m disabled, though. I’m NOT sick!! They’re two very different things. And, being disabled is not a bad thing. I don’t “sufferer from CP” I have CP. It’s a part of me, part of what makes me who I am.

I refuse to see having CP, being disabled, using the chair, whatever part of the whole crip thing you can think of as a negative. It’s not – it’s just a part of my life. But obviously the guy from the Office of National Statistics thought that it was hard, terrible etc.

The fact of the matter however is that it comes down to choice. I could see at all as bad, terrible, woe is me. That might be easier in some ways. But it would be a lot harder and I’d miss out on so much. So I see the positive and embrace life. It’s not a challenge or a daily conscious choice. It just is.

And just in case you need convincing, here’s a picture of me when I went to see The Rocky Horror Picture Show on Friday night (see my blog for more on that!). Do I look like someone who is suffering and having a bad time of it or like someone making the most of opportunities for living?

Social Media and Accessibility

There is no denying that social media has become quite a hit in the online environment. Social Media sites are a great opportunity to stay connected with friends and meet new people. The very definition of social media is all about, you guessed it, being social! Let's have a look at some examples (the wording has been changed to make it a little easier to understand):


• Social Media are a variety of user-created works, including video, audio, text and/or multimedia that are ‘published’ and shared in a social environment – Capilano University


• Social Media are internet/computer tools that allows individuals and groups to create and exchange content as a means of communicating with peers – Bottle PR


• Social Media defines the various activities that join together technology, social interaction, and the creation of words and pictures – formicmedia

From even these examples, it is fairly reliable to suggest that Social Media is a term that refers to the creation of forms of communication in a social environment. IDEAS NSW uses a number of Social Media sites outside of this blog, inclusive of Twitter and Facebook.

But how accessible is Social Media? And what Social Media tools are out there that are really reaching the whole possible audience? Social Media is important and should be open to all, allowing people to avoid the barriers of time and distance.


I have found a very helpful document, the ‘Social Media Access Review’ from Media Access Australia and would like to share some of their findings in regards to six named Social Media sites, including: Facebook, Skype, YouTube, Flickr, Twitter and Myspace. Their findings were:

• Facebook: ACCESSIBLE.

• Skype: ACCESSIBLE.

• YouTube: SOMEWHAT ACCESSIBLE.

• Flickr: SOMEWHAT ACCESSIBLE.

• Twitter: SOMEWHAT ACCESSIBLE.

• Myspace: INACCESSIBLE.

(Check out the document for comments on each site).

It is great that Social Media sites such as these are starting to become more aware of the issues faced by people with disability online, but there should be a standard for ensuring that these sites really are for EVERYONE to socialise. It is not uncommon for people with disability to feel isolated in their own world, Social Media allows communication without that isolation.

Social Media is definitely not something to ignore, it is ever-changing and moving fast towards becoming a prime toll for socialising, however, there is still a way to go for these sites to really connect the dots and recognise the ways towards a new tomorrow, where accessibility is for everyone!

Getting it Right

Rich Fabend


About five months ago I was asked to blog on a on a blog site in Sydney Australia called DisCo (Disabilities Conversations) which is part of a website called Ideas.org. So, I downloaded a clock onto my home page which would tell me the time in Sydney and another gadget to let me see what the daily weather was like. At times I publish blogs I’ve used on my own site with minor adjustments. I thought it would be very interesting to write on the blog in another country but I realized there might be some different perspectives once in a while. There have not been any until my last blog entitled Patience and Persistence which reflected my harvesting a wild turkey the first since my disabling accident 11 years ago. Imagine my surprise when my latest post was introduced by the following two paragraphs written by the blog editor:

Hi everyone, welcoming you to another blog from Rich Fabend. Just a side note, we in no way encourage the use of guns or promote hunting or anything of the sort. In Australia there are tight rules and restrictions and definite no-nos about the use of guns. I in fact love turkeys as I think they are very fascinating creatures. However I think that there is a great lesson and moral behind the words that Rich has presented in his blog posts here, and that is about patience and adapting to change.

… He lives in America and it is currently Hunting season there, thus causing the theme of his posts. But from his posts we can see that disability is a daily thing, however if we learn to live with it in our own way, it moves away from something that runs our life to something that is part of our being.

When I first started writing about hunting I fully expected I would get responses from individuals who were uncomfortable with those actions. I also thought any issues would originate in the US and I believed these blogs would be well accepted in Australia. I have absolutely no problem with the comments that were written. Personally, I believe the United States should have stricter gun laws. However, the more I thought about it the more I realized my own misperception of Australia had been formed from watching movies like Crocodile Dundee, Australia, Quigley Down Under and the television exploits of Steve Irwin the Crocodile Hunter. Obviously, my concepts were inaccurate. I guess that’s the equivalent of people believing that New York State is one huge megalopolis resembling New York City.



While our views of other countries and cultures may be very limited, one thing is perfectly clear to me and that is that, as individuals with disabilities, we are a subculture of our own regardless of where we live in this world. We are brothers and sisters united by our struggle to deal with the profound challenges that confront us every day. I believe, in many ways, we have more in common with each other than we have with many of our able-bodied countrymen. When we communicate there is an unspoken acknowledgment of what our daily lives are like. We immediately understand what each of us is dealing with and feel no great need to explain it.



I originally started my website http://www.handihelp.net/ so we could communicate with each other and more particularly share ideas, shortcuts and equipment that we have developed to reduce the frustrations we face daily. Why should an individual joining our subculture not be able to have ready access to the things that have already been developed which would improve their quality of life? I am speaking here primarily of equipment but I also feel strongly that we should share the mental processes, attitudes and beliefs that have allowed us to adjust to situations that life has chosen to place us in.


So first I should apologize to the people of Australia for the foolish beliefs I had about their country. More importantly, I think we of the world’s disabled community should make greater efforts to share our thoughts and information which will enable us to live more stress-free lives.

Introducing Guest Blogger Emma Crees - Just the Way I am

I would like to introduce a new guest blogger. I found the words of this inspirational woman on her own blog 'A Writer In A Wheelchair' and just had to see if she would come across and do some blogging on the DisCo site. So for my readers and followers, we are in luck, Emma Crees is now a marvellous contributer to the content of this blog. Emma has Cerebral Palsy and the great thing I like about her own blog posts is that she doesn't let this define her as a person, but at the same time respects this as part of her (and in fact wouldn't change it if she was given the chance). I feel lucky to be able to get the support from such wonderful bloggers and have them really share their experiences, attitude and methods of dealing with change and their lives. I hope that the readers and followers of this blog can appreciate their words and even relate to them in some way!

Emma Crees

I’ve been asked if I want to guest blog over here occasionally and as someone who loves to both write and blog I couldn’t really say no!


I’m Emma and I’m 28. I live in Oxfordshire, in the UK. I’m a volunteer advice worker, a knitter, a sailor, and a reader. A writer, a sister, a daughter, a friend and a swimmer. An advocate, a mouthy girl, stubborn, tattooed and colourful. And lots of other things.

I’m also a wheelchair user as I’ve got Cerebral Palsy (CP). Those other things are the more important things – I’ve used the tag line on my blog before that I’m “So much more than ‘that girl in the wheelchair’” and that’s true – I definitely am.

But it’s my writings about my disability over on my blog that inspired Alyssa to ask me to blog over here on DisCo. Or at least I’m not sure what it was if it wasn’t that! I would describe my blog – which is called A Writer In A Wheelchair – as a bit of a mixed bag of everything. I talk about what I’ve been up to, things I’ve been thinking about or have done. I talk about having CP and also about having depression (I’ve been on and off of anti-depressants for about 7 years). I have a bit of a running series on there called “You know you’ve got CP…” I write about my attempts to lose weight, my hobbies, my hopes and dreams and anything else that comes to mind.


A lot of it does end up being about my disability. Either totally or just in passing. That’s because life is about disability when you have one. Or at least it is in my opinion. Being disabled doesn’t stop me doing stuff but it does influence the when and the how of doing stuff. Occasionally it also influences the what of what I get up too. But you have to think about if there is access to places you want to go – will I manage to get in, get around, be able to use the loo, or get a drink etc. It actually becomes second nature. Sometimes I do it without thinking. Sometimes I’ve been to a place so many times I no longer need to do it

I don’t think that having CP is a bad thing. It’s all I’ve ever known and I wouldn’t change it. Should I wake up tomorrow morning and be able-bodied or “normal” or whatever you want to call it I really wouldn’t know what to do! In fact I’d turn down a cure if I was offered it. I realise that’s something of a controversial viewpoint but it’s how I feel. And really, there is no such thing as normal. Just average, and average is boring!


Currently the tag line on my blog is “What more does a girl need than the ability to write and some wheels?” and that’s even more true I don’t think I’m suffering in anyway being a wheelchair user. Of course there are things I’d like to have in my life – more money, a paid job perhaps, an all expenses paid holiday somewhere. But the ability to walk? I neither want nor need it. I’m fine just the way I am.