Wednesday 31 August 2016

Seeking Guest Posts for Dysautonomia Awareness Month: Theme this year is DIVERSITY

[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at]

Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices. 

This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups.  The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.

Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.

So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.

Bring on the DIVERSE voices!


If you fit into one (or more) of the  groups below (or if there's one I've missed and you want to suggest) drop me a line. 
  • Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month)
    I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
  • Men
  • People of Colour
  • Culturally and Linguistically Diverse Groups
  • Rural or remote
  • Over 40 years of age
  • Disabled
  • Countries where there is little to no awareness (I'd love to share stories from areas such as South and Central America, Europe, Asia, and Africa, I do get email queries from patients in these areas desperate for information, so I'd love to share more of their voices). 
*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.

How to Submit your story:

I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.

Submissions must include:
Short bio max 100 words.

Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.

Max 500 words.

12 Times New Roman 

Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).

Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.

I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.

Send to rustyhoe (at) livingwithbob (dot) com

Submissions close Saturday September 24th 2016

Looking forward to reading and sharing.


Saturday 27 August 2016

Disability erasure at it's finest. Thanks Brazilian Vogue.

[Image: a screen shot of a Vogue Brazil promotional photo of able-bodied models Cleo Pires and Paulo Vilhena cripping it up thanks to the miracle of photoshop. Who knew your paralympic dreams are simply a mouse click away?]

How do you celebrate paralympians without actually celebrating paralympians? By photoshopping Brazilian soap opera actors to look like they are missing limbs. Actual paralympians were there on set. To provide inspiration. Because that's what disabled athletes and disabled people in general do best. We provide inspiration. Not enough to actually be in the photos. Oh no. We couldn't have that. Not us icky confronting disabled people. Ew. Who'd want them in Vogue. It might make people uncomfortable. But we can make the disabled totally relateable and palatable by using able-bodied actors. It's not like paralympians could be worthy in their own right. They are only worthy when seen in reference to the able-bodied. Look, they're just like us. Brazilian Vogue has come out to say it wasn't their concept and that the actors involved were responsible. That they chose to run with the advertisement and can see nothing wrong with the concept. Well lets just all shift the blame and sweep that part under the carpet.

The caption runs that "We're All Paralympians", Except we're not. I'm disabled, I've got the progressive neurological condition, even a set of wheels to get around, and a disabled parking permit, and still, I'm not a paralympian. Neither are the Brazilian soap stars in question, or any other able-bodied folk. Or 99% of disabled folk. You know who are paralympians? The actual paralympians. The disabled athletes at the height of their professional sporting careers, they are the paralympians. And they are the ones who aren't good enough to be in an advertisement promoting the Rio Paralympics.

What hope do us mere mortal, boring, average, run of the mill disabled folk have, if even paralympians can't make the cut for an ad for an event in which they are the stars.

In an advertisement promoting the Paralympics. I'm probably going to keep mentioning that part as despite having first seen this advertisement a day or two ago I am still gobsmacked that they came up with this concept and it made it's way through all sorts of levels where someone could have spoken up with a gentle "Hey mate, you might just want to rethink this", or a more direct "You're being an ableist dick, dude" and simply vetoed the whole idea.

It's just the latest instalment in the very public farce that has also meant that there is a shortfall in funding for the Paralympics. That money set aside to enable disabled athletes from poorer nations to attend was instead used to clean the green pools at the Olympics. That venues are being dismantled and many sites where the paralympians will be housed are not accessible. But hey, you know, they're for disabled folks, so it doesn't matter quite as much.

Whilst this is a very public example of ableism, it is symptomatic of a wider community attitude not just in Brazil but around the world, that disabled bodies are unpalatable and that as a group we matter less. And most of us don't have the currency of being awesome athletes to offset our unpalatable disability. Though in truth while so many are all happy to claim the achievements of our paralympians, the same people are often the ones that bemoan our drain on public coffers for the National Disability Insurance Scheme (NDIS) or are indignant at the humble parking permit.

Time and again we see discussions of disability not involving the disabled people who live the consequences of those discussions. We are continually talked about or around. Others know better. Hell, an able-bodied actor can play disabled better than an actual disabled actor. It's all very "Don't back-chat me fella. I know boats!"

Time and again we see discussions of diversity that don't include those with disability. We are either not included, or the issue is not even raised. Even in discussions of feminism disability has often been seen as an after thought or inconvenience, or disabled women have been told how to express their views and even shut out by groups purporting to support all women.

Time and again we see token representation. Oh you have one person in a wheelchair on one panel in a fortnight long festival. Well you've met the quota. It's not like we could have two disabled people present. Or that there could be more than one type of disability represented. Oh no. We are a homogenous group obviously. We must all think and live the same way. Or as in the glaring case of the Perth Writers Festival earlier this year accessibility was such an after thought that a disabled person couldn't even get around to see events. Nothing like an inaccessible festival to tell you in no uncertain terms that you're not welcome.

Time and again we see claims of diversity (I'm looking at you Myer) that don't include disability (or various ages, body types etc). Whilst organisations such as Starting with Julius are making great strides when it comes to including disabled children in advertising, adult representation is still far from common. The same companies that are using disabled children in advertising aren't transferring that same diversity to their adult range. And diversity in general rarely includes disabled models. Or if it does that representation is so rare as to be heralded as suddenly representing a more accepting and inclusive fashion industry. The same fashion industry that still fails, with some exceptions, to even acknowledge that disabled people can and do enjoy fashion.

Media in general still falls into three camps when reporting disability. We are either inspirational , worthy of pity, or as is now more often politically expedient, "bludgers" or "leaners". The media continually reinforce a negative portrayal of disability though their language (eg they continue to fall back to the use of terms such as "wheelchair-bound" or "sufferer" despite clear guidelines on disability reporting being readily accessible). Not only do the wider community come to believe these categories, but as this piece by Carrie Wade examines, disabled people as members of that same community, end up internalising ideas of Good Disabled and Bad Disabled. Or really it is Good Enough. We get a pass at a certain level. Not enough to be worthy of a Vogue shoot mind you. Don't start thinking you're good enough for that little disabled person. Good Enough that we approve of your existence, but know that you can easily become Bad Disabled at any time if you don't toe the party line.

It is the combination of these beliefs and actions that lead to increased levels of violence against the disabled.

We are less than.

Not even worthy of being in a photo shoot when at the pinnacle of sporting prowess, in an advertisement promoting and celebrating the pinnacle disabled sporting event. (The sarcastic part of me wants to know if Kylie Jenner was a consultant on the concept.)

Is it any surprise that more and more disabled people are turning to social media to share their lives in writing and through selfies on platforms such as Instagram and Tumblr. We are continuously erased from the current social zeitgeist by active exclusion or pity/inspiration tripe reporting. While the Brazilian Vogue issue is a glaring example it is both a product and extra fodder for the exclusion and othering or disabled people. Be it the recent massacre in Japan where the victims remain nameless numbers with the thin veneer of cultural norms used as an excuse for this erasure, or the disturbingly high rate of violence against disabled people, in particular disabled women, around the world including here in Australia, all derive from the same base level of negative beliefs surrounding disability and the people who are part of that community.

"Other statistics indicate that 90% of women with intellectual disabilities have been sexually abused. 68% of women with an intellectual disability will be subjected to sexual abuse before they reach 18 (Frohmader, 2002)".  (‘Double the Odds’ – Domestic Violence and Women with DisabilitiesWritten by Sue Salthouse and Carolyn Frohmader. This paper was presented to the ‘Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne 15 -17 September 2004. Copyright 2004.)

It is estimated that 1 in 5 people are disabled. Yet we continue on the fringe, an unpalatable reminder of the fallibility of the human body and life in general. Disability is seen as a horror to be avoided and those who live it are seen as living horrible worthless lives. How on earth could someone be disabled AND happy? We are seem as villains in movies, welfare bludgers by the politicians, poor things (stop patting me, people!) or inspirational heroes for getting out of bed or buying milk. And when we raise our voice to call out ableism we are whingy. The people we hold to account for poor behaviour or attitude assume the role of victim. We are told to be quiet. People have good intentions. They know better. And they are shocked and angry that we have the audacity to say we might actually be able to articulate the nuances of life as a disabled person better than them.

"Pires [an abassador for the Rio Paralympics and one of the models] defended the photos on Instagram saying, ‘As ambassador, we lend our images to give visibility [to a cause], and that’s what we are doing, my God.’" 

AKA Damn you ungrateful disabled people how dare you tell me I'm wrong!

Brazilian Vogue and the actors/models involved can side step all they like. For the rest of us we can see it for the BS it is. And we're over being quiet.


Monday 8 August 2016

Wheelchairs, Walking sticks, and Wall-walking.

[Image: 8 photos of a green-haired woman varying between sitting, standing, using a walking stick or a wheelchair. Photos also include her awesome merle Great Dane and constant furry companion, Freyja. The woman is smiling and happy and frocked up in each picture.]

My mobility varies.


Sometimes hour-to-hour.

Some days I can stand unaided.

I can walk around my house, furniture and wall-walking. Using my strategically placed chairs. Or Freyja makes a handy Great Dane sized stabiliser by my side.

Some days I need my walking stick. It allows me to cover short distances. To get in and out of the car. Out in the backyard or out to the mail box. I like to use my legs when I can but some days even the best Can Do attitude wont make the muscles work.


Some days I need my wheelchair, especially if there's distance to be covered, my legs are particularly weak, the pain is too much, my blood pressure is playing up or the exhaustion overwhelming.

Some days I'll use my wheelchair to go out, say to a cafe, AND will then use my walking stick to traverse a short distance to a non accessible loo. Often further exhausting myself in the process.

Some days I'll use my wheelchair but manage to take an unaided step in and out of the car.

Some days I'll mix it up as my body decides to be finicky or I push my piddly boundaries.

Hell, some days I can't get out of bed or crawl to the loo.

And while I'm at it, 99% of the time I'll frock up because I enjoy it. Because disabled people can enjoy can enjoy fashion. And we can dress however we like and don't have to conform to a narrow and false idea of how we should look or act.

It seems to not only confuse but anger many people when they see people standing from a wheelchair or alternating the mobility devices they use. But it's really not that hard. Not everyone in a wheelchair is paralysed or uses it 100% of the time. They are a mobility aid for a whole host of disorders.

Mobility can vary for many people. We use the best tool for the task on the day.

My wheelchair allows me to leave my house and gives me independence and freedom that I would otherwise be denied.

My walking stick allows me to make my way to my car in the driveway or pick grab the eggs from my chook house.

My legs let me do, well not a lot these days, but when they decide to get their shit together for a little while I make the most of it.

Disability is diverse.

Open your eyes and your mind.


Today's musical accompaniment is dedicated to a now blocked individual on Instagram. If you see someone using multiple aides, or standing from their wheelchair, don't show yourself to be an uneducated, small-minded, judgemental arsehole. It's not really flattering for you and has to be an exhausting way to go through life.

Sing it Babs!