Inclusion at festivals

Have a look at this article on social inclusion at festivals, particularly the point about the segregation of "disabled" facilities from facilities for everyone else. True inclusion facilitates everyone and segregates no-one.

In fact, the phrase "disabled parking" is a misnomer - parking cannot be disabled, can it? "Wheelchair parking" is another one - I'm sure someone somewhere has come up with a great cartoon about that! In fact, just google 'wheelchair parking cartoon' and click on images and you'll find a few.

Kudos to Inis Oirr's "Drop Everything" festival by the way.

Life is travelled once

'Life is travelled once
Today's moments become tomorrow's memories
Cherish each moment, good or bad
Because the gift of life is life itself'

Author unknown

These words helped me today.

Participating in the National Disability Authority's 'Your Voice, Your Choice' this week

My experience included…

…learning a life-lesson from a charismatic published author who uses a powerchair and whose PA interprets his speech for people who don’t know him.

…an interesting, challenging chat with another parent, sitting in the hot sunshine(!) in the courtyard of the Royal Hospital Kilmainham before the event.

…listening to harrowing stories of acquired disabilities told matter-of-factly, because we all have to get on with our lives, rather than dwelling on the unfairness of it all.

…being in awe of a person with a visual impairment who is an achiever and totally in control of his own life.

…agreeing with many that rights are the basis for constructive change in the system – specifically the UN Convention on the Rights of Persons with Disabilities, the Legal Capacity Bill and the Children’s Rights referendum.

…coming face-to-face with an incredibly broad range of people with disabilities and their advocates, taking me out of my own narrowly-focused life.

…enjoying the brevity of the introductory speeches and the care and attention given to people who had specific dietary requests at lunchtime.

… the relief at having the opportunity to freely voice opinions and relate experiences of the “system” and…

…the sincere hope that those opinions and experiences will be carefully considered by the NDA and Minister Kathleen Lynch.

And what was that life lesson I learnt?

“It is important that people let me do things that are bad for me.”

Isn’t that one of the things that defines us as adults? Free will.

Only this is not the case for all people with disabilities right now.

Have your say here before June 30^th 2012.

Challenging people's limited expectations with humour

Francesca Martinez on the Frank Skinner Show a couple of years ago.  She was on RTÉ's Saturday Night show recently. A comedian who happens to have CP, she has a very funny, very refreshing take on life. Nothing like laying waste to people's limited expectations with humour!

What my journey has taught me so far

I was asked recently by a grandmother whose new grandchild was diagnosed with a chromosomal disorder, what advice I could give her and her family. She was asking me because my 14 year old Stephen has a rare chromosomal disorder. This got me thinking….as I look back now on my journey of being a parent of a child with a disability and if I could have talked to myself all those years ago, what would I have said?

Here is what came into my head:

• You are doing a great job – you can do it.
• Take one day at a time.
• Break milestones into mini-milestones, celebrate all achievements.
• Everyday find something you are grateful for, some days it will be the blue of the sky or the green of the grass.
• Take timeout, take care of yourself – this is a marathon, not a sprint.
• Surround yourself with people who give you positive energy and limit contact with those with negative 
• Connect with others in the same position.
• Connect with others who are outside the ‘disability’ world.
• Allow yourself sit on the ‘pity pot’ (feeling sorry for yourself) occasionally but don’t forget to get off it ( I sometimes get stuck on it).
• Take time with your partner.
• Take time with your other children.
• Take time with yourself.
• Celebrate difference.
• Laugh, live and love!

"You and I"

A very thought-provoking piece by Elaine Popovich.

I am a resident. You reside. 

I am admitted. You move in. 

I am aggressive. You are assertive. 

I have behavior problems. You are rude. 

I am noncompliant. You don't like being told what to do.

When I ask you out for dinner, it is an outing. When you ask someone out, it is a date.

I made mistakes during my check-writing program. Some day I might get a bank account. You forgot to record some withdrawals from your account. The bank called to remind you.

I wanted to talk with the nice-looking person behind us at the grocery store. I was told that it is inappropriate to talk to strangers. You met your spouse in the produce department. Neither of you could find the bean sprouts.

I celebrated my birthday yesterday with five other residents and two staff members. I hope my family sends a card. Your family threw you a surprise party. Your brother couldn't make it from out of state. It sounded wonderful!

My case manager sends a report every month to my guardian. It says everything I did wrong and some things I did right. You are still mad at your sister for calling your Mom after you got that speeding ticket.

I am learning household skills. You hate housework.

I am learning leisure skills. Your shirt says you are a "Couch Potato."

After I do my budget program tonight, I might get to go to McDonald's if I have enough money. You were glad that the new French restaurant took your charge card.

My case manager, psychologist, R. N., occupational and physical therapist, nutritionist and house staff set goals for me for the next year. You haven't decided what you want out of life.

Someday I will be discharged . . . maybe. You will move onward and upward.

What is it like to walk down a street when you have autism?

This Youtube clip gives you some idea of what it's like to walk down a street when you have autism or an ASD (Autistic Spectrum Disorder). There are some interesting comments on the Youtube clip!