Real Talk about Disability, Support, and Mental Health

Hello yes it's been a while.  Life has been... life.  However I have a couple of ideas for future posts so maybe this blog isn't dead just yet!  Apologies for the stream of consciousness post, a lot of ideas all interconnecting - it made sense in my head at least.
For the record: I'm ok, and I will be ok - even though it's ok to not be ok, OK? 

In a perfect storm of circumstance, it's somewhat ironic that today on Mental Health Awareness Day, I'm finding myself feeling rather low, and rather vulnerable. 

Post overseas holiday fatigue, seasonal changes, a state of ambiguity about my future has left me in a vague holding pattern of low mental health and general wellness.  Not feeling bad, but not feeling awesome either, especially after the highs of amazing holiday seeing parts of the world I'd never seen before.  Friends not doing well in different ways, most due to poor mental health, and another due to deteriorating general health also compounds the mood.  On top of that, it seems a lot of my disabled friends have been having to put up ads looking for support staff as some of their workers have for various reasons, left.  A recent blog post from kiwi disability blogger Philip Patson (tw: suicide) left me thinking and nodding my head for how true it was.  How vulnerable being a disabled person can be when you need support, how the difference between having it and not is the difference between a good or ok day and bad day, and how scary, frustrating, difficult, and/or dangerous it can be to be at the whims of the people supporting you.  How no matter how many plans and contingencies you might have in place (if you're lucky enough to have the resources to do so in the first place!), they can all fall through so easily and leave you quite literally stranded.  At the point of reading that blog, I was empathetic but felt fortunate that I still had one reliable support person working for me and the situation was hypothetical.  I did have two, but one left several months ago and my efforts to replace her had gone nowhere.  Until today...

credit: Eduard Militaru
[Image of pale pink curtains half closed over a window with a
small pot plant in a white dish on the window sill. The view
out the window is blurred in the background.]

This morning I received a message from my personal assistant telling me that she was no longer able to work for me but would work till I could find someone to replace her.  Her reasons were absolutely fair and I do not blame her one bit, but suddenly I felt like everything was falling away again and I was back to square one.  I do not know anyone who could replace her, I haven't had luck replacing the last person, and the platform I used to find her in the first place keeps throwing up the same few options who have since found other jobs, are not available at the times, I need, or are unsuitable for various other reasons.  I'm not the only one that has been struggling in this way either.  In the past 3 months, I have known at least 5 other disabled people in my community to lose staff and have to put up ads looking for new staff.  I'm fairly certain it's not because we're rubbish employers, there seems to be a nationwide shortage of good support staff.  Which is distressing and depressing quite frankly, to be trying to figure out whether it might just be easier to move back to my parents' house where none of my friends live nearby just so that I can get the support I need to have a functional life.

Which brings me to the Mental Health Awareness Week.  I don't know anyone who isn't aware of Mental Health.  Maybe that speaks more to the circles I run in, but as a person with multiple mental illness diagnoses over the years, I'm increasingly cynical of the awareness campaigns, because awareness only goes so far.  Just like awareness of support needs only goes so far.  I'm aware I have support needs, I need there to be support available.  Most of us with mental health issues are aware we have them, there just isn't support available or accessible (namely affordable!).  I'd like to see less focus on awareness and more on action - in both areas.
But #ItsOKtonotbeOK

Fidget Spinners and Disability

Recently, I've noticed a big trend in fidget toys, particularly a type called fidget spinners.  At a recent pop culture convention I attended, no less than three separate booths were selling different types of fidget spinners, one was specifically dedicated to fidget spinners.  I have very mixed feelings about this.

Disability Day of Mourning 2017

TRIGGER WARNING: ABUSE OF DISABLED PEOPLE, MURDER, FILICIDE, DEATH, VIOLENCE.

March 1st is over here in New Zealand and I've seen disappointingly little about the significance of today for the disability community, but here's a few thoughts from me about Disability Day of Mourning and why it exists and matters.

Disability under the Reign of Trump

I've been keeping pretty quiet on this issue because I feel like there's enough bad news out there already and plenty of information already available about how and why the Trump administration is bad news for disabled people.  There's also the fact that I come from a position of privilege being a citizen and resident of New Zealand where the socially backwards policies of the republican government in power are less likely to impact me.  But I have friends in the United States who will and are directly affected and I can't keep silent anymore while others suffer.

2017: New Year Updates

It's well into February now, but this is my first post for the year so Happy New Year Everyone!

Politics of Labels

I've been having a lot of discussions lately about the relevance of labels and the issues with some labels versus others.  It's a topic that directly affects a lot of people so naturally discussions can become somewhat heated, but I felt the need to share my thoughts.

Speechless and Media Representation

Anyone who knows me well knows I have a lot to say on the topic of the importance and positive impact of diverse and accurate media representation,  As a kid growing up disabled, I didn't see many (if any) positive and realistic representations of disability that weren't tokenistic (appeared in one episode then disappeared with no further mention), or inspiration fodder for non-disabled viewers.  So it makes sense that I grew up feeling like disability is a bad thing and that I needed to do whatever I could to appear able-bodied as I could - often to my own detriment.

I often get told I expect too much, that I'm too 'politically correct' or that I look for the flaws in everything and will never be satisfied with anything in terms of media.  Personally I think it's more important that everyone views media critically, but that's an issue for another day.  I'm here to say that I've found a show that gets disability representation right and it's brilliant and I love it!

An Update...

I've been a bit quiet on the blog front lately, and while I plan and wish to maintain a presence on here, my posts will continue to be sporadic, but there's good reason for that, as I will explain...

The 'Other' side

Some terms that often come up in sociology and social justice discussion is that of 'Other' and and 'marginalisation'.  I've talked a little bit about marginalisation in previous posts, and Othering is essentially the same, though in my interpretation encompasses more of the individual interactions and ableism.  However the differing interpretations of different people based on different experiences can make working out solutions tricky...

Awesome in Theory...

It's nice when you can solve all the world's problems around the dinner table right?  Unfortunately life is a little more complicated than that...