Hmmm

By Terrible Palsy.  Cross posted at terriblepalsy.

In our local paper there is a column called “Chatroom”.  It seems its purpose is for people to send SMS messages and they get published, kinda like letters to the editor without the correct spelling.

I don’t often read the column because I get a bit shocked as to the aggression and rudeness of the messages.  Lately, they have been all type of abusive messages about disabled and parents with prams car spaces.  Like this:-

“All the sooking about the pram spaces.  What about the disabled spaces.  How many do they need.  A lot more mums go shopping each day than disabled people.”

and

“To P..d off mum.  You would not have to struggle with babies etc etc if you stayed where you belong.  Chained to the kitchen sink.  So instead of moaning about parking as you flutter from dress shop to cafe to shoe shop, do something productive and iron your hubby’s socks and hankies.”

Makes me feel so safe and secure about the world Moo is growing up in.  Is it just me or are people getting less and less empathetic?

How many sticks to build a footpath?

Australia ratified the United Nations Convention on the Rights of Persons with Disabilities on 17 July 2008, one of the first western nations to ratify the convention.

Good. Now comes the hard part - getting various levels of Australian governments, government agencies and people in general to make inclusion policy reality. Time for deeds not words guys. We’d like to receive some inclusion action at least as good as the NSW Government offered to pilgrims with disabilities who visited Sydney during World Youth Day (week).

Maybe the Convention will be a bit of a legal stick. Inclusion is not a noticeable feature of the affluent area of Sydney that I live in; clearly the “carrot” of simply valuing diversity has had no effect. There is a little talk but not much action to enable inclusion for everyone, regardless of ability.

Indeed, my local council cannot afford to provide footpaths/sidewalks to enact their policy of “accessing the community”, despite collecting rate payments from homeowners in an area where most residential properties sell between AUD $800,000 and AUD $3 million.

Council has invited me to spend AUD $20,000 funding the construction of a public footpath on our street, whose development approval they will expedite. Isn’t that big of them? I guess I’ll own the footpath then. As Queen of the Footpath I may let the power go to my head and refuse permission for some people to “access” my footpath.

I had asked the local council to provide a footpath and a safe road crossing so my 13 year-old son could take himself independently between home and high school. This is a distance of under 1 kilometre, which currently we drive in our van as I won’t let him drive his powerchair on a busy road, mean mother that I am. Although, there is no accessible parking near his school anyway.

I can’t write to Council rejecting their offer of privately funding a public footpath until the steam has stopped coming out of my ears and the expletives stop whirling around in my head. In the meantime, I will send them this:

NOT ACCESSIBLE

NOT ACCEPTABLE

And a link to the UN Convention website. Article 9 is a good starting point - here’s an except:

“On the fundamental issue of accessibility (Article 9), the Convention requires countries to identify and eliminate obstacles and barriers and ensure that persons with disabilities can access their environment, transportation, public facilities and services, and information and communications technologies.”

learning

by ekie

The thing about having an ASD is that I usually don’t just ‘pick up on’ things.  I need everything spelled out to me, exactly as it is, so that I can process the information before I proceed.  Luckily, I love learning, and even though I am done with my formal education, I am still learning things everyday, including some things that people my age probably figured out long ago.

Some things I’ve learned lately:

1.  When your mother says ‘water the tomatoes while I’m away’, she does not just mean the tomatoes, and she does not just mean once.  She means, water the garden, all over, every day so that it doesn’t die.

2.  When people say, ‘Haha, you have a Boston accent!  Say park the car in Harvard yard!’ they are not looking for a long explanation of why, exactly, you cannot park a car in Harvard Yard - at least not the main one, the Law school yard has a small lot near where they usually put up the sukkah.  Oh, and if it’s move-in day, or - no.  They just want to hear you say the phrase because to their ears, your Boston accent sounds funny when you say it.

3.  You can, in fact, get sunburned - very sunburned - on a cloudy day.

4.  When you are so used to the topic of gay marriage that you automatically say ‘husband or wife’ instead of ‘husband’, you really need to catch yourself when talking about future plans in an interview because, you know, you may accidentally give interviewers an impression that, while no big deal in the scheme of things, is not an impression you meant to give.  Oops.  (I don’t suppose that in my thank-you note, I can say, oh by the way, I’m actually straight?)

5.  Indoor plants are also included in the edict to water the plants.  “How long do you think it would take you before you remembered on your own, if I didn’t remind you?”  my mother just asked me.  “Well, I don’t know.  It’s been a week, and I haven’t remembered yet.”  I replied. 

So.  What have you learned lately?

costs

by ekie

tank of gas: $37

drive to beach: 1 hour

beach parking: $25

bodily injuries: one bad skinned knee, one very-freaking-painful sunburn, one case of swimmer’s ear that I already had but exacerbated by going under water

going to the beach with a friend my own age, no parents in sight, fully independent: priceless

Stop bugging me!

By Jodie

A quick, hassle free trip to the supermarket is usually impossible when you have children.  One of my children has a physical disability and is unable to walk.  Getting a park in a accessible parking spot is supposed to make it a little easier for me.  It also has the potential to completely ruin my shopping experience, as I found yesterday, yet again.

 

As I pulled into my parking space, I noticed the woman in the car next to me staring.  Instinctively, I checked if she had a parking permit.  She had one.  As I got out of my car she wound her window down and abruptly said “You do realise that you are in a disabled parking spot, don’t you?”.  I was instantly annoyed.  I snapped back, “Yes.  I do have a permit.  I have a child with a disability in the car.”

 

I was so mad I was shaking.  Why did I have to explain myself to her?  This woman still didn’t look satisfied with my response and said “Oh, alright”, then drove off.

 

What made me angrier was that I see this woman often.  The only reason that she didn’t recognise me, was that she is always too busy staring at my child.

 

This is not the first time that I have been questioned for parking in a accessible parking space.  I can understand that these people are driven by frustration.  I am sometimes inconvenienced by people without permits parking in these parking spaces too.  I do understand their intentions.  However, they should check first to see if I hold a permit.    Then, once they see that I do have one they should leave it at that.

 

I once had an elderley gentleman ask me if I had borrowed the car.  I did not have the energy to explain so I just said “No, it’s mine.”  I then smiled at him, got into my car and drove off.

 

I also have, on two separate occasions, had elderley women question my reason for holding the permit after I told them that I had one.  They didn’t see me struggle as I transferred my child into the car.  They always challenge me before they have all of the facts.

 

My explanation for this behaviour is ignorance.  They only see their own struggles.  My child’s disability is not what gets me down, it is attitudes and behaviours like these.

update

by ekie

I feel as if I’ve been a remiss member of this blog.  It’s not that I’ve been neglecting it, just that I keep starting entries and not thinking that they’re good enough, or disability-related enough, to be posted, so I don’t.  So today, here’s a mostly-non-disability related update.

1.  Work on the living room (see last entry re: stupid roofers) continues.  I am being absolutely of no help to anyone because I think all shades of beige and white are the same and would just as soon buy the really cheap carpet.  My decorating tastes run to flowered wallpaper and farm animal borders.  I like bathrooms with mermaid or fish themes.  Unfortunately, my mother wants to sell this house in a year or two, and potential buyers are not so interested in those things.  Also, on the advice of a realtor, half the curtains in the house are coming down and being replaced by roman shades or weird fake-wood panel things.  I miss the curtains.  The house misses the curtains.  I think the house feels naked.  If it had arms, it would be trying to cover up its’ poor, naked windows. 

2.  I am going through a real period of soul-searching regarding myself and my diagnosis.  I finally tried the local Aspergers association, and I mean really tried, not just one meeting, and to my surprise am making good connections and possibly even friends there.  This particular Aspergers Association sees NLD as a sub-type of Aspergers, indistinguishable from it, and the more I learn about Aspergers, the more I see how my own prejudices against autism were preventing me from accessing some great resources and meeting great people.  The stigma of autism prevents the NLD community from joining the Aspergers folks, but that’s a shame, because the Aspergers folks are a lot better connected and do a much better job of taking care of their people than the national NLD organization does.  I feel that I have finally found a place where not only do I fit in, I’m valued, and my opinons are valued.  Best of all, the women are just as outspoken as I am.

3.  No job nor job prospects yet - ugh.  This is really getting me down.  I am picking up some work with an absolutely adorable 5 year old with special needs and maybe some more babysitting, but I’m really getting soured on going to interviews and trying my hardest, and not having people ever bother to call me back - even when I call them and ask them just for feedback on the interview process when I didn’t get a job. 

4.  It’s summer, though, so if I have to be living at home, at least it can be in this gorgeous weather, with the lake nearby and our first beach trip coming up, and huge broiling thunderstorms soaking my vegetables.  So far I have produced a half-dozen tiny green tomatoes, some quite decent spinach and three vigorous squash plants with no squahes as well as a dozen gladiolis with no flowers.  My lupines, zinnias and snapdragons from seed all failed.  My sweet peas from seed came up great but no flowers.  I know miracle-grow is terrible for the environment but I found a packet of it that we bought some other year and, since it is already bought and cannot be returned, think I should put it on my vegetables because, you know, it really works.

5.  I need the mason, who was due twenty minutes ago, to come now, so I can take my walk and then go out shoe shopping, again.  I have been shoe shopping for a week with no success.  Why is it so hard to find totally flat, not totally ugly sandals?  I can’t wear heels due to my motor problems - any sort of heel even a half-inch one.  I found the *perfect* pair online but apparently my size does not exist.  Stupid feet.

Also, I’ve noticed that whenever I post, it says that it’s tomorrow.  For the record, right now, it is today, nine minutes to eleven on Tuesday, not near 3 pm on Wednesday.  I guess that is Australian time?  Weird.

 

cp blog roll

My friend Emma has come up with the great idea of a CP blog roll. It should be a great way of linking those of us who either have CP or are a parent/carer of someone with CP. Hopefully it will become a great resource too. If you have a blog or website and fit the above description please go to http://wheelchairprincess.com/blog/ and leave a comment with your blog details and a short description of your blog if you wish.

Greatful for what I have

This post was written in response to a comment that I should be grateful for what I have and not whine about having different abilities.

I am lucky and blessed in so many ways. Compared to most people I know I am relatively unaffected by the CP. Sure, I use a wheelchair to get around and have difficulty with fine motor tasks and there are times when I cannot transfer by myself but there is so much that I can do and this has given me opportunities that many people with CP don’t have. I can communicate and function without a lot of physical support (I can feed myself and take myself to the toilet as long as it is set up with rails etc). I understand that I am lucky in these ways and I think I show that by not complaining about the things that I cant do yet society seems to be set on reminding me of this fact at every chance it can.

Take the other day for example. I had travelled into a nearby city. I had some shopping to do so we hit the shops for a couple of hours and in that time I had no less than 11 people tell me I was lucky because of something in relation to my different abilities (I don’t like the word disability). Your so lucky to have that wheelchair was a common comment. I wish I had one was another. I’m not quite sure why people think it is so great to have a wheelchair, mostly I think they were tired of walking around the shops, but I just wish they would be careful what they wish for: it might just happen to them one day. I guess if this happened to some of the more influential people (a politician for example) that have made similar comments to me then it could be a good thing because I bet that services for people with different abilities would be greatly improved if those people who control such services needed them. Am I being selfish to think this way? I hope not for I am truly grateful that I have had the opportunities I have had- I just want to ensure that I have more in the future and that future generations do as well.

Disability Fiction

In recent weeks I have been searching for books with a character that has Cerebral Palsy in them. I could find plenty of non fiction but no fiction. I have two questions for readers of this page?

1. Do you know of any fiction with character that have CP?

2. If I were to write something would you be interested in reading it?

Please leave a comment with your answers

Living life by Wheelyfast

This is my first post on equal not special. I have been nervous about posting because the other writers write so much more eloquently than I do but a recent comment by a friend (who was no doubt well meaning) has me inspired to write. First a little background for those readers who don’t know me- I am currently completing my second semester of law school via off campus study (I study at home) and I also attend the local TAFE one day a week. I have numerous health issues as well. The friend said “I admire you for all that you do. I couldn’t do it if I were like you”.

At the time I responded that my friend would be surprised what she could do given the opportunity. Reflection though had me wondering exactly what my friend meant by if she were “like me”? Did she mean someone who studies 40+ hours a week and crams in multiple medical appoints plus time with family and friends? I would like to think so, as this would mean she sees me as an equal but somehow I think she meant that as a wheelchair user I am something special because of what I do. I don’t see it that way- to me I’m just living my live the only way I know how- full speed ahead reaching for my dreams, just like everyone else.