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PhDs are tiring. Deadlines, reviews, reading, writing, meetings, ethics, worrying that you are not smart enough, and boring your family and friends with your specific knowledge and problems with a fraction of a section of a discipline. It takes 3 years before you can add ‘Dr.’ before your name, and unless you are granted a scholarship, you also have to work. By no means am I complaining about having this wonderful opportunity, but I wanted to express the difficulties I’ve encountered having a major physical disability whilst completing my PhD.
I have a rare form of disability (especially rare for women) called Limb Girdle Muscular Dystrophy. It’s a genetic condition which involves the deterioration and weakening of my muscles from the neck down over time. I can walk a few steps with aid, but spend most of my time in a wheelchair and need help with most daily routine activities. Luckily it won’t affect my speech or mental faculties, so I can always make myself heard and understood. I’m in my second year of a PhD in neuropsychology, specifically researching autistic children. I make my living by tutoring undergraduates and occasionally writing the odd piece on my area of speciality. I don’t get any special treatment at my university, and I prefer it that way but sometimes I want to (metaphorically) stamp my feet, throw a tantrum and rant about being tired, worn out and in physical pain.
Ever since I was a child, my parents knew there was something physically wrong with me. After years of being fobbed off to different specialists, I was eventually diagnosed at age 11. I have always been fiercely independent and refused to use a wheelchair in the first few months of high school. As part of the condition’s symptoms is bad balance and lack of strength, I finally succumbed to the wheelchair after months of attending school being petrified of being knocked over by rowdy pre teens. From then on I’ve been adamant that I don’t need special treatment or considerations in life based solely on my disability. It’s resulted in a lot of people calling me ‘brave’, which has always confused me. What is brave about wanting to be treated equally?
Another common comment I receive when people hear I’m doing a PhD is that I’m ‘inspirational’. Would they say that to an able bodied person? Admittedly, sometimes I inspire myself. I look back through my short life and my achievements and think ‘You know Holly, for all the obstacles that have been in your way, you’ve done alright. Keep it up’. Other times, when it’s late at night, and I’m sitting up in bed reading my 27th paper and my neck and back are screaming in pain, I feel like giving up and mooching off the government for the rest of my lousy life. Of course, all PhD candidates experience this, but I don’t think they all need to recuperate after short trip to the grocery store, need daily physiotherapy, or need to ensure that every venue or place they travel to is wheelchair accessible. If I’m unlucky enough to catch a cold or develop the flu, I’m flattened. Imagine being at the weakest you’ve ever been, then add a flu. Sometimes I feel like the boy in the bubble, if a member of my family is sick in any way, they’re not to come near me!
Unfortunately, with my physical disability comes a mental one too; depression. I’m on medication for it and it’s under control, but sometimes the monster rears its ugly head and the last time this happened I’d spend hours at a time unaware I was gazing numbly at a blank wall while time to work on my PhD submission slipped away. I’d open my work document and stare at the pixels on the screen. I thought it was stereotypical writer’s block until I started to not want to leave the house, and then my room. I’d experienced a suicidal thoughts/plans depression black hole a few years previous and was scared this would be my last one. Luckily this bout left me so numb and unmotivated, I couldn’t be bothered ending my own life. I was petrified of facing my supervisor and admitting I had done nothing in the past few months. I got to her office, my depression robot took over and I very matter-of-a-factly told her I suffer from depression and that I was in the middle of an episode. Luckily, I work and study in my university’s psychology faculty so it was nothing she hadn’t seen before. She reassured that she knew that I knew what I was talking about with regards to my literature. She asked me right then and there to tell her what autism is. I could easily verbalise it, of course I could, it’s my life’s work and passion. “Great, now go home and write down a few sentences about autism. That’s it. No more” she said. My clouded brain hadn’t even considered the possibility that I could condense my work into bite size pieces. It worked. Within a few weeks I was back on track. I’d increased my anti-depressant dosage, and the fog was lifting.
A year later and I’m about to start my experiment. Unfortunately, this usually exciting part of one’s PhD is at risk of being dampened by my body’s regression. I am right handed, but I have relied on my left hand and arm for most tasks as it physically the strongest. My disability has interestingly made me almost ambidextrous which if you HAVE to find the silver lining, is a cool bonus. However, over the past few weeks I’ve experienced a noticeable decrease in strength and control in this arm. It’s frightening. What will this mean in a month? A year? What abilities will be removed permanently from my life? Brushing my teeth? Picking up a drink? Actions that the average able bodied people don’t think twice about are now disappearing before my eyes. It is difficult to take a piece of paper in the form of a PhD accreditation seriously when I’m losing my independence and livelihood day by day. What’s the point?
The point is that I have no choice. If I had nothing to strive for and distract myself with, I would ruminate on my body’s fate. I’ve done that before, and it nearly killed me. So when people call me ‘brave’ and ‘inspirational’ it makes no sense to me. What’s my alternative? This is me surviving.
You can’t buy much with seven dollars. Maybe a large fancy frappuccino Starbucks coffee, or a sandwich. To me, $7 is nothing. I just spent $7 on a bumblebee costume for my cat. So why is this GP $7 co-payment such a big deal? Why are people so up in arms about university becoming more expensive? Or having to wait 6 months to receive financial assistance from the government?
This latest Liberal government has made me ‘check my privilege’. As much as I hate that phrase, it perfectly sums up my thought process over the last few weeks. Now by no means am I using $100 notes as toilet paper, but I’m very financially comfortable, and have been for most of my life. My financial stability is mainly provided by my parents, as I’m still living at home and only have a part time job. I pay board, and I finance all my own purchases and socialising activities. Ideally I would have liked to have moved out of home by now, but I have a debilitating physical disability which makes working full time difficult and living independently close to impossible. I am very thankful to the Australian government who has provided me with a Disability Support Pension since I was 18, and I’ve never taken it for granted.
Despite my disability, I’ve had a very privileged life. I received a $12,000 academic scholarship for my undergraduate degree, and my parents and I went halves in paying for my Honours degree, so I have no HECs debt. I physically can’t drive, so I don’t have a car or petrol to pay for (although it does cost me $30 to get to university and back every visit, but that’s a complaint for another day). I don’t have to think twice about how to pay for things I need or want. I feel guilty admitting that because I know for the majority of people in Australia, and even around the world, this isn’t the case. I’ve always known that I was lucky in this way. I don’t consider myself ‘spoilt’ as my parents have instilled a very hard work ethic in their children, and we’ve always had to work for our money. Whether that was chores when we were kids, or getting a part time job when we were teenagers (I worked around my disability as a young teenager by making and selling jewellery at the markets), we were never given money, nor did we expect it from our parents.
‘I’ve worked hard for my money’ is a sound-bite often thrown around by millionaires. Before the budget came out, I thought this about my situation too. But after listening to and reading people’s stories about how the budget drastically will affect their lives, I realise that it is absolute bullshit. How is being raised in an upper middle class family, having my university paid for, going on overseas holidays, and being at university for 6 years ‘working hard’? I’ve been given every opportunity I could want. My education has been great, and although my need for healthcare has been quite extensive due to my disability, my parents have always been able to pay for my blood tests, heart scans, hospital stays, and medication.
This is why I was initially puzzled over the uproar about $7 payments to see a GP. Why was it such a big deal? Seven dollars is nothing. It wasn’t until I started to read about the backlash that I truly considered what seven dollars might be to a single mother who only makes enough to cover rent, food and power, or a pensioner relying on government assistance to survive. Then I started finding statistics about average incomes in Australia (this breakdown helped put it in perspective: http://mattcowgill.wordpress.com/2013/05/13/what-is-the-typical-australians-income-in-2013/). Without revealing my parent’s income, I discovered I was within the top 1% of the nation. I was genuinely shocked. How had I been sheltered from this reality my whole life? I thought we were just a comfortable middle class family. I really hope that this blog post doesn’t come across as bragging or ‘poor little rich girl’, because that is not my intent. I am just attempting to explain how my privilege has blinded me from some realities in life, and how eye opening these past few weeks have been.
Being raised in such an individualistic, capitalist and classist society can really warp your view of the world. I still react to stories of poverty with ‘well why don’t you just work harder/get a better job?’. It’s deeply ingrained and I’ve only just started to question it. It’s very embarrassing to admit to myself just how privileged I am in this aspect of life, but I hope by continuing to seek out more information and people’s stories I can understand and help others to as well.
I think a lot about porn. It’s fascinating to stop and consider that we’re living in a time where within seconds you can search for and see a naked stranger engage in sexual acts tailored to your preferences.
As much as we all like to believe we’re not primitive chemically driven animals, our brains are not much different to that of cavemen and women who lived tens of thousands of years ago. Sure, we’re great at adapting to the latest smart phone, and achieving our high scores in Candy Crush, but our brains are not used to nor have they evolved for the onslaught of information that comes from watching porn. For all of humanity, the acquisition of sex has been our number one goal. Our entire evolutionary journey is based on who can adapt to their environment well enough to stay alive and do the horizontal tango with a fertile partner. This involved effort; primping, preening, strength, intelligence, a bit of Machiavellianism, and bravery. I’m not suggesting that humans don’t do this anymore. Go to any club on a Friday night and you’ll see this in action (usually sans ‘intelligence’). Our brains were made for this. I also believe that there is a part of our brains that was made for porn.
The concept of mirror neurons seems like pseudoscientific rubbish. They are neurons that fire only when you see another human or animal perform an action, eg scratching their arm. Your brain recognises that this other being is engaging in this behaviour and fires the same somatosensory cortex neurons associated with that behaviour. The only reason you don’t act out these actions is because your visual system kicks in and tells you that your eyes/occipital lobe have not reported that same sensation on your arm. Therefore, your brain receives no message from the skin on your arm telling you that it’s being scratched.
Essentially, mirror neurons are empathetic neurons, helping you connect with other humans and animals by inadvertently feeling what they feel. This is why you wince when you see someone get hurt. For a tiny fraction of time, your brain thinks you were also harmed in the same way. I believe it’s the closest that humans come to being psychic.
It’s not difficult to see how these mirror neurons may be employed whilst watching porn. An fMRI study was conducted with a sample size of 10 healthy heterosexual men (I acknowledge that this is a small sample) where their physical erectile response and their brain activity was measured whilst they viewed pornographic videos. Unsurprisingly, eight out of ten of the subjects experienced an erection, but the more scientifically exciting results were that of their brain activation.
‘The level of activation of the left frontal operculum and of the inferior parietal lobules, areas which contain mirror neurons, predicted the magnitude of the erectile response. These results suggest that the response of the mirror-neuron system may not only code for the motor correlates of observed actions, but also for autonomic correlates of these actions.’ (Mouras, et al., 2008)
Isn’t that incredible?! Pretty sure I had a nerdgasm when I came across this journal article (no pun intended). Of course all studies need to be properly reviewed, and limitations considered, and this is no different, but I just can’t help but get a bit excited when I read studies like this. These scientists have found mirror neurons that activate and predict an erectile response. This means that when you’re watching porn, your brain actually thinks that you’re engaging in these sexual acts. Before your frontal lobes and ‘common sense’ can tell you that you’re really alone and just watching a video of other people, your ancient primitive brain is making you feel like you’re really there!
This adds a whole other level to understanding why porn is so enjoyable for most humans. Objectively it shouldn’t be very pleasurable; you don’t get to join in and it may even further remind you that you’re forever alone. Yet ever since humans could create scratchings on cave walls, we’ve been depicting each other having sex. Pornography is not new, what’s new is our immediate access to it. There are many who cry that porn is bad for you, it degrades women, and it makes men slobbering idiots. I think they’re worrying too much about what people do in their own time. My view is that if all parties are consenting adults (the person viewing the porn and the people featured in the porn) and it’s not hurting anyone else, then go for it. For those who insist that porn is the devil because it’s so addictive, I dare them to find something that cannot become addictive. Addiction occurs when the brain fires reward based chemicals (serotonin, dopamine, oxytocin, adrenaline) whenever the behaviour occurs. If the behaviour is repeated too much, the brain needs to work harder to release these chemicals. Technically, you can get addicted to anything. Do you LOVE model train sets? Bubble wrap? Vegemite? If you get a big enough ‘high’ from using these things, you can become addicted. A behaviour only becomes a problem if it is maladaptive. If porn is interfering with your ability to work or maintain relationships, then you may need help. Other than that, I believe that porn is just another fun thing that humans have discovered that they enjoy.
Science has come through for us again. Sure, it’s not time travel or a solution to world hunger, but it’s an amazing insight into the goings on inside the most complicated structure in the universe; our wonderful brains.
Aforementioned study: http://www.sciencedirect.com/science/article/pii/S1053811908006897
This isn’t a pity post. If I wanted pity I could just jump in my wheelchair, go and sit at a cafe and look sad. I get enough pity in my life.
This is a post about being sick for an extended period of time. Most colds or flus last about a week or so. I’ve been unable to leave the house except for doctor’s appointments for about 4 weeks now. I have a mystery virus that is making me weak as fuck, nauseous, in pain, tired, lethargic and I’ve lost my appetite (noooo!). Because of my MD, it’s hitting me hard. My already weak body is being battered by whatever this crapballs illness is. I’ve had to turn down invites to outings, and I’ve had to blow off my boyfriend visiting 2 weeks in a row. It’s getting ridiculous.
But that’s not the point of this post.
I thought as a cripple, I was pretty limited in my mobility and life choices. I use a wheelchair, and as you can imagine, they’re not exactly suited for fun activities like going to the beach, or road trips or sky diving. Yes, that escalated quickly. I’ve always just sighed and said ‘oh well, that’s life’, maybe had an angry cry if I really felt I was missing out, but then I’d move on. However, now that I’ve been basically bed bound for a month, unable to even concentrate on my thesis or work that I CAN do from bed/home, I’m appreciating my past freedom even more. Sure, it was restricted, but it was my reality. I don’t know any different. But now that I do know different, this different is shit, and I want to go back to being a somewhat restricted cripple.
I’m not a ‘silver linings’ type of person, but if I had to extract one from being too sick to move, it would be that life isn’t that bad in my restricted cripple state.
(Thanks for reading, I know it’s not a particularly interesting post, but I’m going bloody insane and needed to word vomit my thoughts out. Isn’t that what blogs are for?)
I’m really sick of articles, features, blogs and stories about body image. Before I go on, I do acknowledge that looking and feeling good is a really important part of one’s self esteem and self-worth, and that society in general is very superficial when it comes to judging people according to their beauty. These aspects of body image have been covered extensively, to the point where every new feature on it is flogging a dead horse.
Haven’t we got more important things to focus on? I feel like writer’s talents are wasted on whining about how mean society is, how they feel pressured to feel thin, etc. If I hear another story about how ‘plus sized normal women need to be represented in magazines and on the runway’ again, I’m going to stab someone in the eye with rusty scissors. Do you know what I do if something minor annoys me? I IGNORE IT. Is anyone making you buy those magazines or watch those fashion shows? I know the argument of victim blaming pops up a lot and that ‘I shouldn’t have to change MY behaviour, they’re the ones in the wrong’. I would appreciate and support you in this argument if the issue wasn’t so frivolous and unimportant.
If you identify as a feminist or a humanist or any ‘ist’ you want, aren’t we supposed to be fighting the big battles? I’m pretty sure when women were fighting tooth and nail to be allowed to vote and control their own finances they weren’t worried about how well their petticoats fittted them or had even heard the term ‘body image’. I personally feel embarrassed and prone to facepalming when I see an article about how a woman has ‘ignored society and embraced her body!’. Have we gotten to such a point where we need to high five each other for figuring out that women come in all shapes and sizes?
Before I get any cries of ‘You don’t know what it’s like to be fat/ugly/-insert other body image problem here-!’. You’re right, I’ve never been overweight, I don’t know what it’s like to be judged on my looks.
Oh wait, yes I do.
For most of my early teenage years I was obsessively aware of my body, but unlike most teens, this was because I had just started using a wheelchair due to an advance in the breakdown of my muscles after being diagnosed with Muscular Dystrophy. I’d worry that people were staring at my legs, their shape, their state, etc. I’d cry myself to sleep about my legs, my bony shoulders and my hairy arms (a combination of my dad’s hairy genes and extra growth due to my skinniness). So don’t think I’m discounting anyone’s body image feelings, I’ve been through it myself, but then something changed. In my late teens I received psychological and medical treatment for my depression and anxiety and started focusing on improving things I could control. My body had failed me, but my mind was still sharp and amazing (this isn’t opinion, it is a fact, brains are amazing). I feel like I had an epiphany where I realised that people were going to stare and judge me anyway, so I had to have a spoonful of concrete and accept it.
Of course, like everyone, I have bad days where I want to throw a tantrum because I don’t look as good as I’d like to. But do I let it take over my life? No. Because there is so much more to life. I’ve found amazing role models in my life who exemplify exactly who I want to be when I grow up.
Someone who has made me appreciate life and not care about eating that extra Tim Tam is my mum. She recently recovered from breast cancer after having her breast removed. To her, the removal seemed to be a no brainer. She was so brave. So brave that this cancer tragedy turned into a bit of comedy between her and I. When we’d go shopping together, she’d push me in my wheelchair and people would look at her (she was wearing a scarf after her hair fell out during chemo) and give a sympathetic smile, then look down, see me in the wheelchair, do a double take, and try to look even more sympathetic and caring! We were ‘Cancer and the Cripple’.
My university lecturer is another one of my heroes. We have so much in common that I suspect she’s me in twenty years through some kind of space time continuum warp. I’ve never seen her wear a speck of makeup and her attire usually consists of a t-shirt and pants. She’s one of the most intelligent, funny, classy, and amazing people I’ve ever met. Whenever I’m agonising over a hair out of place, or an unsightly pimple, she pops into my mind and I think ‘Ahh fuck it’ and ignore it.
I really do believe that a lot of body image problems can be solved with a ‘Ahh fuck it’ attitude and a change in priorities. Do we really want our lives to be controlled by a mixture of fat, skin, muscles and bones? It should be filled with experiences, learning, laughter, friends, family, music, writing and love. Put down the fashion magazine and eat a spoonful of concrete.
Like My FearBlandness Facebook page!
Since I frequent nearly all the social media websites ever made, I thought why not make a Fearblandness Facebook page? Come and ‘Like’ me and we can be BFF4eva!
I only ever advertise something if I love it. Consider me Oprah and I’m doing ‘My Favourite Things’.
Aroha Silhouettes (http://arohasilhouettes.com/oxytocin-necklace.html) is a fantastic online store which sells handmade jewellery. However, this jewellery is extra special, as it’s modelled on molecules such as dopamine, seretonin, coacaine, and my favourite (and the necklace I just purchased and linked to) oxytocin.
Tania makes the jewellery, and I had a bit of trouble with postage concerns and she answered my email right away and cleared it all up for me. She couldn’t be more helpful.
So I’m telling you to buy this jewellery. And guys, I know you might be thinking this doesn’t apply to you, but I can promise you, if you have a nerdy science loving girlfriend, one of these necklaces or earring sets will put you in the good books FOREVER.
Alan Jones recently said on air that women in politics ‘destroy the joint’. I disagree. I talk about some great female politicians Australia has, and how blatant sexism should not be tolerated in the media.
Most people don’t like being labelled as ‘ists’; sexist, racist, homophobic…ist. Have you ever considered whether you’re an ‘ableist’? That’s right, there’s another word to make you feel guilty about your privileged status. This time, this privilege comes from having been born healthy or not having been involved in a major accident. Statistically, there’s a large chance you are an ableist, and according to the blogger ‘Bitch on Wheels’, you carry an invisible ableist back pack (which you can easily carry because you’re physically healthy enough to). I came across this list of privileges and thought it would be a bit of fun to describe my experiences with some of the items included.
A bit of back story is needed of course. I am ultimately better than you because I am not an ableist. I have a physical disability called Muscular Dystrophy. It basically means the proteins in my muscles deteriorate over time, making my whole body (from the neck down) weaker. This leads to me losing the ability to do normal things such as walking, bending, reaching, and somersaulting. I was diagnosed when I was 12 and currently spend the majority of my time in a wheelchair. It’s become normal for me, I’ve adapted, because I have no other choice. However, there are some things that I shouldn’t HAVE to adapt to, as they are discriminatory and condescending, and this is where the ableist’s back pack comes in.
I’m only going to address the items that most apply to my situation, but if you’d like to see the entire list, check out Bitch on Wheel’s blog here: http://exposingableism.wordpress.com/2009/10/12/the-invisible-backpack-of-able-bodied-privilege-checklist/
I’m guessing that not a lot of you have to worry about whether you’ll be able to fit into a certain venue, unless of course you’re the Hulk, but I think if that’s the case, you’ve got bigger problems. I have to research most venues before I attend social events. This includes ringing restaurants to set up wheelchair accessible tables, ordering specialised seating at concerts, and asking friends to scour their houses for small steps or difficult doorways. I miss out on many social gatherings due to their locations, which I’ve come to accept, but there’s still a bitter stab of disappointment when I realise I’ll be missing out on a fun beach party or bonfire.
Now this might not seem strange or offensive to you, but imagine if you were called upon to represent a group of people because of something you were born with. Would you feel comfortable representing everyone with brown eyes? Or everyone who is left handed? Of course I’m completely in support of anyone who chooses to speak for those with disabilities. Disability advocates have made the world a better place for me, and without them, I wouldn’t have ramps built at my university, or government funded help. However, I have been approached many times to speak on behalf of those with Muscular Dystrophy, wheelchair users, or people with varying disabilities, simply because I was born with it. I don’t feel that I can speak for others. Everyone’s experiences are different, and my story doesn’t represent everyone’s.
This is a major item for me. This is where the condescending nature of people is revealed. Before I continue, I need to say that 99% of people do not mean any harm when they talk to me like a child, they’re simply ignorant of their behaviour. This isn’t a case of people being mean or abusive, it’s a lack of insight into the lives of those disabled people they’re talking to or interacting with. I’ve had people rub the top of my head, pat my shoulder, talk slowly and loudly to me, and completely ignore me and talk to whoever is with me at the time. It even happens with medical professionals. These are people who should know better, yet I’ve still had doctors address my parents with questions about my health whilst I sit there, staring straight at them, mouth agape. Along with the blatant condescending treatment, the amount of times I’ve heard the words ‘inspiration’ ‘proud’ and ‘brave’ be thrown around will make you feel a bit queasy. I am very proud of myself and how far I’ve come, because it would have been much easier for me to curl up in bed and refuse to open the curtains (although there have been periods in which I did this). However, when people congratulate me for doing normal things such as graduating high school, going to university, etc, I feel like pointing to the able bodied student next to me and saying ‘We both had to do the same work and pass the same tests’. I didn’t get where I am today because of my disability. I got here in spite of it. I’ve done nothing out of the ordinary. When I conquer Mount Everest, then you can give me a congratulatory high five.
(For a much better and funnier article about ‘Inspiration Porn’ check out one of my favourite writers, Stella Young: http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm)
Now that I’ve come to a stage in my life where I’ve completed my degree and I’m comfortable with my skill set, I feel that it’s time to look for a job in which I can utilise these skills, and make a step towards procuring a successful and fulfilling career in my field of interest. In fantasy land, everyone is employed based on their skills, experience, personality and work ethic. Skin colour, gender, background or disability isn’t a factor considered by the employer in fantasy land. Also, there are fairy floss trees and unicorns giving kittens free rides. Unfortunately, this is the real world and I have to be realistic about who will employ me. Even I know, if I was an employer and was presented with two candidates of equal worth and quality with regards to what the company wants, I would pick the able bodied applicant. It’s just easier. Desks don’t have to be altered, ramps don’t have to be installed, and special circumstances don’t have to be considered. So when it comes to employment, I know it’s going to be a tough road with lots of rejection and unfair judgement, but I’m going to have to suck it up and trudge on.
To be honest, this is an issue I still struggle with. I’m often uncomfortable when I see stories in the media about someone having a terrible accident, becoming disabled in some way, and then having their partner described as ‘inspirational’ for staying with them. Surely, if you loved someone enough, you wouldn’t think twice about caring for them in that situation. It makes me feel like if I was to be with anyone, helping me with my condition would be a burden to them because it’s such a big and inspirational task to help someone with a disability. I admit, I have grave doubts and worries about future partners and if I’ll be a burden and whether they’ll resent me, but I feel like these worries will decrease with age and experience.
Contrary to my previous jokes about you all being ableists, I didn’t write this to induce guilt or make you feel bad about complaining about your own lives (although I do have to bite my tongue when people try to sympathise with my situation by saying ‘I know how you feel, I broke my foot once.’). I just thought it was interesting to delve into privileges we don’t know we have. Furthermore, if this can stop just one person from treating those with disabilities in condescending or offensive ways, I feel like I’ve done my good deed for the day. Now I’m off to find those kitten riding unicorns…