Please Stop “Helping” without my Permission: It Really is a Pain in the Arse

 

I have written many a blog about how you should not help someone with a disability unless they ask you to. Further, if you offer someone your help and they say no, then leave it. However, I’m pretty sure that people think I only say this because:

A. I am too embarrassed to ask for/accept help,

B. Because I don’t realise that I can’t do something myself, or

C. Others believe they can make the task easier/quicker for me.

 

I have one thing to say to you. WRONG!!! 

 

 

Here is why:

The front door of my apartment building is really heavy and it is not an automatic door. Plus, every time I pass through it I have Cecily (my walking frame) with me.

 

As the majority of times I go through the door it is on my way to or from a taxi, I am usually on my own.

 

I am pretty weak, wobbly and I have no peripheral vision (I.e. I can only see things that I am looking directly or that are directly in front of me).  So, it has taken me a bit of trial and error but I have found a way to get through the door completely by myself in a way that is easy for me.

 

I simply open the door with my bottom and then lean my full weight against it while I bring Cecily through. It might look a bit awkward from the outside, but actually, it works really well and is very quick.

 

The other day I was doing just that when a “helpful” person who happened to be walking past decided that I needed help.

 

Can anyone see where I’m going with this?

She reached for the door handle and wrenched it back so that the door would open wider and I could get through more easily. Unfortunately, though, when she did this I already had my full weight leaning against the door. This meant that when the door flew backwards, so did I and I landed heavily on my arse.

 

 It bloody hurt!

 

Naturally the lady was mortified and apologised again and again and again before helping me up. I will admit, I was really pissed off and (of course) there were lots of spectators. But, because I knew she was only trying to help I couldn’t very well tell her off.

 

Now, she wasn’t to know this, but because of my vision impairment I didn’t see her coming towards me and I had no time to steady myself and this is why I fell. 

 

If she had asked first I could have explained that I was already leaning against the door and saved us both the embarrassment. It also might have been helpful for her to assume that I have possibly done this before.

 

 

 

 

It’s wrong to assume that someone needs help just because they have a disability. In order to maintain independence we, as disabled people, are able to find our own unique way of doing things. They may not be the way you would do them but they work for us and that is all that matters.

 

 

 

Having such low expectations of me because of my disability is not only offensive but it is also bigotry. In fact, it’s ableism. So, stop it!

 

Sometimes it’s really a pain in the arse…

XOXO 

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Nonna Knows Best: Why I will be voting Yes to Marriage Equality

So, the other day Nonna asked me straight out, “Are you and Damion living together?” And when I gave her the answer, her reaction really surprised me…

 

Just for a bit of background, my Nonna is 95 years old and was born in the tiny Sicilian town of Francavilla where she lived until emigrating to Australia in 1959, with five children, to join her husband (my Nonno) who had been working here for several years

 

Like most of her generation she had an extremely conservative upbringing and was brought up as a devout catholic.

 

She has never worked outside the home, never voted, and speaks very little English

(especially if she knows you can speak Italian).  She does all the stereotypical things that Italian grandmothers do. She’s got an altar, she enjoys force-feeding and she is awesome at laying on the guilt.   But most of all, she believes in the old fashioned values. 

 

So, you can see why I wasn’t keen on telling her that I was “living in sin.” Plus, I was afraid of what she might do to Damion (remember she’s Sicilian). 

 

We are very close. I am even named after her and she has lived next door to me most of my life.  Half of me was scared that she would kill me but really, I just didn’t want her to be disappointed. 

 

I admitted that, yes, we were. Hastily adding how well Damion can cook and how big the portions he serves are. Then I waited for the rant that never came…

 

Instead she said, “Oh well, as long as you love and look after each other that’s okay”  

 

Now, my Nonna is sharp as a tack. I suspect she had worked out that we were living together long before I actually admitted it.  Which had given her lots of time to get used to the idea. But I still couldn’t believe how cool she was being about it.

 

I think this has a lot to do with Damion. She loves him, and for a boyfriend of mine that is no mean feat.

 

It might have something to do with the fuss he makes of her every time they meet. Or maybe it’s because when we went to the Perth Food and Wine Show he got Gary Meagan, (her favourite judge from MasterChef Australia), to autograph his magazine with the caption, “To Nonna, keep cooking love Gary”. Either way we are both still very much alive.

 

For those who don’t know, we in Australia are about to commence a postal vote on the subject of whether or not we are in favour of changing the Marriage Act to include marriage between two consenting adults instead of only between a man and a woman.

 

I was going to write a scathing post criticising those who intend to vote no on the grounds of religious belief.

 

I intended to point out that the book of Leviticus which is widely referenced as forbidding gay marriage, also forbids those with deformity, disability or mental illness (A.k.a. me) from coming to the altar.   Then, I was going to ask if anyone was willing to admit that they agreed with this too, and then hope to God that someone did so I could prove my point that things in the Bible are a little outdated and frankly, quite insane  (which as we have learnt is not allowed in church).

 

But it did seem a little ironic to me to be asking everyone to embracet love in whatever form it takes, with a post filled with anger, hatred and sarcasm.

 

So how about this? If my Nonna at the age of 95 can move and grow with the times then can you find it in your heart to do the same?

 

In these times when Donald Trump and Kim Jong Un are on the brink of nuclear world war, wouldn’t it be nice to have a bit more love in the world?

 

I had 12 years of catholic education and yet I will admit that my knowledge of the Bible is fairly limited. Although, I seem to remember that Jesus did say, “Love one another as I have loved you”.  There was no caveat that I know of where He says “unless the other has a different lifestyle to yours.”

 

Apologies if I appear to be bending Bible verses to suit my own agenda. I thought that’s what we were doing now

 

XOXO 

 

R is the Word

Earlier this year I was lucky enough to see a comedian perform at Fringe World (Perth International Fringe Festival). This particular guy is one of my favourites so I take the opportunity to see him whenever he is in town

 

As usual the show was hilarious (even Damion thought so), but this time around I didn’t enjoy it as much as I normally would.

 

It ended with a joke that used the word “retard”. But this is not what bothered me.

 

I know it’s meant to, some people find this word very offensive. But I just don’t. To me it’s just a word like any other.

 

Don’t get me wrong, I don’t go around using it. But, if someone else does, I don’t see the point in having them lynched. Am I doing disability wrong?

 

Anyway, the joke was such that the “R word” fitted in perfectly. That is, that the use of any other word would not have had as much of an impact and thus the joke would not have worked. As a writer I know  choice of words is important.

 

* for the record, the joke was not at the expense of people who are living with a disability

 

When he dropped the “R bomb” which was part of the build up to the punch line (or in this case the song), I noticed a few people (complete strangers) turned to me to gauge my reaction. It was as if they were looking to me to see whether or not it was okay to laugh. This is what burnt my crumpet!

 

As far as I could tell I was only person there with a visible disability and believe me, my disability is very visible.

 

That word (rightly or wrongly) is usually associated with people like me and I assume that is why I got the attention.

 

But, since when have I been the moral compass?

 

Like them, I was just there to enjoy the show. Not to be a spokesperson for the disability community.

 

I found the joke funny and so I was laughing, but others in my position may not have felt the same way. I felt as though I was being judged and I wasn’t even the one on stage.

 

We are all responsible for our own point of view. If you find something funny, then find it funny and if you don’t, then don’t.  But, it is up to you and what you believe in to make that choice. Not me.

If you’re not sure there are many places you can go to educate yourself on anything you want to know about disability.

 

Have the courage of your own conviction!

 

XOXO

The Recovering Teetotaller: Gotta love a free wine tour

Last year my friend Annie and I won a D-vine wine tour of the Swan Valley. Last month we took our tour.

I’m not a big drinker. In fact, in my 32 years on this earth I have only ever been drunk twice. Still, free wine is free wine, so I was quite willing to make it a hat trick this time.

It was a private tour of just Annie and I being chauffeur driven by our tour guide, David.

Now, regular readers of my blog will know that I always walk as though I have just consumed an entire bottle of vodka. So, I decided to take my wheelchair along with me. I thought it unlikely that copious amounts of alcohol would actually make me walk straight. Turns out I was right. Bugger!

I felt guilty about bringing it along as I cannot push myself and thus, Annie would get stuck with the job. I also feared what the ride would be like after she had a few drinks (only joking Annie). As it turned out I needn’t have worried. David did all the hard work (One of the many perks of a private tour).

Our first stop was Windy Creek Estate for cheese and wine tasting. We decided to sample their array of white wines. And, for a while there I almost looked as though I knew what I was doing. I nodded knowledgeably when the lady explained the characteristics of each one and remembered to sniff and swirl the wine around a bit (I’m sure I saw someone do that on TV once) before taking a sip.

Then we were asked if we would like to sample a dry white wine. This is where my facade came tumbling down.

“How can it be dry?” I said. “it’s liquid.” Poor Annie almost choked with laughter and the lady said, “You don’t drink very often, do you?” Dammit, I was doing so well.

For the record, Google tells me that a wine is considered dry when all the grape sugar is converted to alcohol during fermentation.

With my tail between my legs it was on to Houghton Winery for more wine tasting. But this time I was going to keep my mouth shut. I did learn something though, I like liqueur. I like liqueur a lot. I even bought myself a bottle which I had intended to take to my parents, but that somehow had never made it there.

Lucky for us it was a beautiful winter’s day so with the help of David we went for a quick walk around the grounds. It was so pretty. If you’re ever in the area it’s definitely worth seeing.

With my newly acquired bottle of liqueur and a very light head (we had probably sampled about 20 wines by then), it was off to Jane Brooke for more wine tasting and (thankfully) lunch.

This time I recognised the dry wine. However, it was a sweet rose that I chose to accompany my delicious antipasto meal with the yummiest gluten-free bread I think I’ve ever tasted! Took me ages to eat it though. We hadn’t seen each other for almost 6 months so Annie and I spent most of the time talking. This will not come as a surprise to anyone who knows us…

This, sadly, was where my alcoholic journey came to an end as our third stop, Elmar’s in the Valley, had no gluten-free beer for me to taste. They did offer to make me a cocktail instead, but I decided it would be better to stick to my regular tipple… Coca-Cola. I did get to experience their live music though, which was cool.

Finally, we found ourselves at the Margaret River Chocolate Factory. Of course, the chocolates were delicious (especially the free samples) But, as it was smack bang in the middle of school holidays, the place was packed and we decided to buy our souvenirs and make a quick getaway. I bought some dark chocolate Rocky Road for anyone who is wondering

By the end of the tour I was still a bit light-headed and very, very giggly. Although still completely coherent (I think). I am definitely keen to do that again. Annie is a fantastic drinking buddy!

* I should add here that although I have done a lot of namedropping in this blog, none of the companies mentioned have had anything to do with the comments.

XOXO

Disability is not a Time Capsule

I interrupt this ignorant transmission to deliver an important public service announcement: I realise I have a disability but I’m not Peter Pan, I have grown up!

  

Ok, I am the height of an average ten-year-old so possibly that has thrown you but let me make this very clear.

 

My life as a disabled child was very confusing.  Most of my extended family refuse to acknowledge the fact that I had a disability, (apparently this was just too embarrassing). 

 

I remember one day sitting on the floor watching TV when suddenly my uncle appeared in front of me angry that I had ignored him. Apparently, he had been trying to get my attention, but as he was standing on my left (aka deaf) side and I was facing the TV, I didn’t notice him.  When I told him this, adding that this was part of my disability I was subjected to a lengthy telling off.   Actually, I was not disabled, just very rude.

 

Sadly, this is just the tip of the iceberg. I was never allowed to admit that I had a disability. But, I was never allowed to do what the other kids did because, “don’t you realise you can’t?”  Not surprisingly I developed an identity crisis and severe depression.

 

As I got older, this did not improve. In my late teens and early 20s (even though I was almost completely self-sufficient) I was still being treated like a toddler.

 

On one family occasion, I remember we were all eating roasted chestnuts. A different uncle was feeding said chestnuts to his toddler grandsons by inserting them directly into each child’s mouth one after the other.  Then next thing I know the same slobber-laden fingers were in my mouth too.  EWWWWW! 

 

I pulled away and told him I didn’t want any. But he could not understand why what he had done was inappropriate (I was 24). I struggled with this issue for many years. In the end, I realised that you can’t argue with stupid, and in order to preserve any remnants of my self-confidence I cut all ties with this side of the family.

 

A lot of people (myself included) suffered because of this decision and I felt a lot of guilt. But I have no regrets. I did what was the best for me for once. I know this was my family, and in their eyes, they were helping.  But this is not a good enough reason as it made me feel belittled and inadequate.

 

The problem wasn’t so much what they were doing but rather their disregard and lack of respect for me as a person. My dignity was never taken into account.

 

No one has the right to make you feel bad no matter what relationship they are to you. Your self-esteem and sense of self-worth are precious.  Guard them with your life. 

 

It is a big thing to cut ties with someone though, especially if they are family.  So, if possible, try and explain to them why what they are doing is causing you so much anguish. Sometimes, it will help and the problem will resolve itself. 

 

But if it doesn’t, know that you are not alone. I understand.

 

XOXO 

Job Seeking for the Disabled 101

When I first started making noises about wanting to be a career woman I don’t think many people thought it would be a possibility (and I was far less disabled then than I am now).

 

I was told by those who humoured me, “You should go and work for the Government. They have to hire people with disabilities, it’s the law.” Or “I think there are special factories that will hire you.” This was not what I had in mind.  

 

I did get a job working for the state government and I loathed it.

 

Other people wondered why I felt the need to bother, “surely you’d qualify for a pension.” They’d tell me.

 

 

It has always been my intention to work, so in later high school I did many administration/computer courses and as much work experience as I could talk my way into.

 

My resume` looked good and I got a lot of interviews for office jobs but I never managed to snag one so I swallowed my pride and signed to a disability recruitment agency.

 

It worked and they quickly found me a job. But they insisted on not only coming to work with me but sitting right by my side all day long.

 

Apparently this is what they do for everyone as some people can’t work without them. This was not me.

 

I saw it as intrusive and embarrassing. It also meant that I had to work harder to get my colleagues to trust that I could do things. So we parted ways.

 

13 years on and I am still working for the same organisation in the private sector and loving it.

 

I am not in the same job though. I managed to move around and get positions in other areas through my own merit (that comes with confidence and experience), and at one stage  I had two directors fighting over me. That was nice.

 

Here are my favourite tips to help my fellow disabled jobseekers:  

1.      Be realistic: I am all for having a dream, but if you would like someone to pay you to do a job, it needs to be a job that you can actually do. For example, someone who is vision impaired would not make a very good air traffic controller and, if you can’t use your arms or legs then building and construction is probably not your forte either. That’s not to say that you should just do whatever. Just recognise your skills and limitations when choosing a career path.

 

2.   Be honest: you don’t have to discuss your disability with your potential employer if you do not think it is relevant. However, it might be a good idea to let them know of any possible hick ups that you might encounter. For example, are you likely to need a few extra days off? It is possible that this may limit your job opportunity, but on the other hand it may give your new employer a chance to plan ahead and will avoid awkward conversations later on.

 

3.   Your contribution has worth: I have heard of many people with a disability (myself included, who have been offered an unpaid work trial by an employer who liked them, but wasn’t sure if they were suitable. I always said no to this. If they want you to work for them then they can pay you! I wonder, does this happen in the able-bodied workforce too?

 

Note: I am not talking about actual work experience or doing a “prac,” in these cases you get something out of it too and you know where you stand.

 

4.   Take the help that is offered to you: there are recruitment agencies that specialise in finding jobs for people who have a disability. These can be helpful to get you a foot in the door. Beware though, if you decide you don’t need them any more they can be difficult to shake off.

When you find your dream job there are organisations such as Job Access (if you live in Western Australia) who can help you with overcoming accessibility issues, or in gaining aids such as screen readers if you need them, with little or no cost to your employer. This is done through grants though so conditions do apply.

 

5.   Have faith in yourself: Take it from me, everyone is in business to generate a profit. You got the job because the employer thinks you were the best candidate. You didn’t get the job as an act of charity so do your best and see where it takes you.

 

 

Working has given me a sense of purpose, given me a chance to learn new skills and grow as a person, provided me with an extra social outlet and given me the chance to be financially independent.

 

I hope that if it is what you want, having a job can do this for you too.

 

Good luck.

 

XOXO 

Let’s Hear it for the Jerks!

The other day a woman took a selfie with me without my permission. I was sitting outside the supermarket waiting for Damion, minding my own business, when a woman ran up to me (nearly knocking me over), snapped a selfie and ran back to her friends giggling. It pissed me off but I said nothing.

 

I chose to give her the benefit of the doubt. Maybe she was just really into walls and the blank white one that I was standing in front of was particularly alluring to her.  We all have our fetishes…

 

Then there was the older gentleman at a party I attended recently. He came up to me and shook my hand for no other reason than because he admired me. I thought that was weird.

 

Then, he came over for a chat and spoke to me so slowly, that at first I thought he must have been having a stroke. Alas, he was not.  This too pissed me off but again I said nothing.

 

 

And why not? Because I did not want to seem rude and ironically, I didn’t want to hurt their feelings or embarrass them.  This pissed me off even more.

 

I went to the football a few weeks ago. The match was between Fremantle and Collingwood at Domain Stadium and took place just days after the bombing at the Arianna Grande concert in Manchester.  Security was tight and we were told that we had to present our belongings for inspection before entering. Fair enough.

As we approached the front of the line a security guard approached us and asked if he could inspect my handbag. The problem was he asked Damion not me. I’m sure I don’t have to tell you how this made me feel…

 

I have thousands of stories like this and each time I recount them, people try to placate me with phrases like, “they’ve just never seen anyone like you before, they didn’t know what to say/do” or  “they probably just thought it would be easier for you if they spoke to me.” This is not good enough!

 

Sometimes my disability exhausts me. The fact that people are either overwhelmingly inspired by my presence (this is possibly an exaggeration) or constantly in need of being taught how to be good humans is a lot to take on. I feel as though I am either walking around in a spotlight or completely made of cellophane.

 

It is very simple not to be a jerk. Billions of people do it every day so stop it, now! Your jerkish tendencies put me in a very awkward position. I was not put on this planet to teach you manners. And, I am just as entitled to feel comfortable anywhere as you are.

 

On the other hand, if it wasn’t for jerks I would have never started this blog in the first place (see Inner Musings of a Funny Looking Kid: the origin story).

 

After all, its people like this that make the rest of us look awesome!