Saturday, April 29, 2006

Blogging Against Disablism Day

Monday is the first Blogging Against Disablism Day

Blogging Against Disablism Day

Click on the image for more details. Or read this post* of Lady Bracknell's or In The Deep, which is something I posted to my blog earlier in the week to read just why it is important that we do this.

I've been meaning to post about this for a few days but never got round to it. Then earlier tonight I found a quote which I thik says it all:

"Reasonable people adapt themselves to the world.

Unreasonable people attempt to adapt the world to themselves.

All progress, therefore, depends on unreasonable people."

-George Bernard Shaw

It's time we stopped putting up with acts that have an adverse affect on our lives and being treated like second class citizens. And as the quote says - the only way we can overcome disablism is by refusing to put up and shut up any longer. It's time to become what some people may consider "unreasonable" and fight for our rights.

May 1st. I'll be doing my bit. Will you?

*Prior to reading that article last weekend I had never heard the one in seven statistic however since then I've encountered it in more then one place. Including learning at Naidex that the RNID (Royal National Institute for the Deaf) publish a magazine called One in Seven.

Tuesday, April 11, 2006

Struggles with God - My Answer!

When describing myself, I usually say "I'm not an overly religious person." I was reading my friend Kirsten's blog entry today entitled "Struggles with God" where she asks "Why can't he answer prayers the way we want?" after learning about the death of a child. As you can imagine, this subject hits home with me because it is a question I ask myself daily in regards to my daughter Jenelle. Mostly though, I usually just wonder ... "Why?", as in "Why would God to this to a child?"

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It takes a lot of courage I think to be angry with God, or more specifically at the way he lets things happen in life. I remind myself daily that I too could easily withdraw into a self pitying type of depression because of my daughter, and think that she has come into my life as some sort of punishment, or because I lacked something religious, or because I teased a retarded child when I was young. To me, this is an easy way out ... to push the blame on God. And yes, there are times that I've been angry with him for what he puts her through. Life isn't fair sometimes, and no one is immune, not even children.

My favorite quote about this comes from the movie "Rudy", when the Rudy character is talking to the Cardinal and Dean of the School at Notre Dame asking if he's prayed hard enough about getting admitted. The priest answers, "In all my years of religious studies, there I two constant things I know. There is a God, and I'm not Him!" ... then he says, "Praying is something we do in our time. God answers in his time." Which also means God answers in his own way too.

I finally found peace with God regarding Jenelle a few years ago now. Like I said, it is easy to put the blame on God for who she is, but instead I choose to focus on her purpose in life rather than her struggles. Instead of anger towards God, I see that sharing her life and story with the world has brought inspiration to others and has changed me as well. I see the beauty in her small accomplishments like someone who sees the beauty in seeing the Northern Lights for the first time. It is God's work, in the most profound way. And when you think of it like that, it is easier to accept his answer to your prayers, which isn't really what you were praying for or the answer you were expecting.

Lately with all of her new accomplishments, I get a lot of email responses like "Your prayers are finally answered!" Well yes, but not exactly. You see, when I pray to God about Jenelle, I never ask him to stop her seizures or to make her "normal", etc. I usually just ask God to continue to give me strength to be her Mother. Because honestly, Jenelle gets plenty of prayers about her medical condition... but in reality, having the strength to accept her is what keeps me going. And yes, God does answer that prayer daily - if he didn't, I'd probably be a mess! However, I am enjoying her new accomplishments as an added bonus!

So while it is difficult to understand why God answers prayers in a certain way, remember that sometimes the answer has a deeper meaning, or that the prayer has been answered another way. Thank you Kirsten for making me think about that, especially this week.

Sunday, April 09, 2006

A Different Kind of Normal

I just read a story in a new parenting magazine called Wondertime. The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.

The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.

The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child:
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The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.

Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.

Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."

That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."

Saturday, April 08, 2006

Respect for All

I believe that disability awareness is a very good thing, as is acceptance.I also believe that some people who harp on about how people need to be more aware and/or accepting are hypocritical.
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Someone I know (but don't know that well) and his partner have recently spent a considerable amount of time talking to me about how it isn't fair the way disabled people get treated and everything we have to go through.He had a stroke a few years ago.

Yes, disabled people deserve respect.I agree with that.Yes, we should be treated the same as normal people.I agree with that, although I don't agree with the term "normal" in this context.I wouldn't say that everything I go through isn't fair.Then this is where my perspective differs as I've been disabled from birth and disability is all I've ever known as a lifestyle.

Unfortunately, it's not the only point on which our opinions differ on this issue.Because then we come to Lucille.

When I was 16 I met Lucille, and we became great friends.We shared a taxi to college and even though we weren't on the same course, we often saw each other during breaks and got on fabulously.Lucille is also disabled, because she had meningitis when she was four.She has some physical difficulties and uses a walker.She also has learning difficulties and although she is 24 like me, she has a mental age of eight or nine.Neither of us are at college any more and we didn't see each other for a long time.I cried my eyes out that last day at college because I thought I wouldn't see her again.

Then I started going to a disabled swimming group with Ryder Cheshire Volunteers.Then a few weeks later Lucille started going to the same session with a group she belongs to.Our friendship continued as though the four years that had past were four days.

I go every week, she goes alternate weeks.So one week I swim seriously and the second I swim a little, I chat, I tease, I joke, I giggle and I hang out with my friend.I have a great time.I look forward to those Friday's because I love Lucille to bits and spending time with her always makes me feel better about myself.We usually get together in the coffee shop for a coke and some chocolate and chatting after swimming.

We were sat there the other day with the people who I'd talked about awareness with. Lucille had been sat at the table talking with them before I got there and shortly after that, she went to get a drink.Whilst she was gone from the table, one of my supposed friends turned to me and said "Lucille's been telling us about her family, is that true?"How was I supposed to know?I don't know everything about my friends lives.If that's what she told them then it's true and to doubt her is incredibly disrespectful.

Then they laughed at her when I asked her a question when she was eating and when she had finished she told me "it's rude to talk with your mouth full."It is rude, but it's ruder still to laugh at someone and go "she knows, see" like your surprised that she has basic manners.In fact, that appears to show that she has more manners than they do.

After a while we got onto disabilities and she explained about her disability, they commented that "she just wants to be normal poor little girl."Now, I'll forgive their calling her a little girl for she is very short but she is not a poor little girl.In fact, I was so proud of her.For she sat there and said, "I'm only disabled because I had meningitis, if I hadn't had it I wouldn't be disabled.But it's OK, I'm here."

I don't know many people who could sit there and say that.How they got "she just wants to be normal" from that I don't know.

Lucille might have learning difficulties but she is intelligent.She can deal with the money in her purse and read what number it is to get her chocolate from the vending machine just as well as I can.Hell, she often ends up helping me as I can't always reach it to get it out of the tray.She can write, read a little, swim, use a computer, goes to the gym, helps to look after her nieces and nephews and plays bowling along with loads of other stuff.I love Lucille to bits and I wish more people were like her.At times she may be a little naive but it's part of what makes her who she is, and when it comes down to it she knows what matters and what counts.

My friends with the problems about people treating them with respect ... they don't know what matters.Respect is earned, not given and if they can sit there and be blatantly disrespectful to someone they know is one of my best friends because her disability is greatly different to theirs then I'm not going to respectful to them.

If they want respect because of the disability of one of them/the status of the other as a carer they have to respect others with a disability.Because if they respect those with a physical condition but not those with learning issues, they are just as bad as those able-bodied people they were complaining about.

My acquaintance deserves respect, I deserve respect and every Tom, Dick or Harry deserves respect regardless of disability or not.Lucille deserves respect too.

Respect, acceptance and access are things all people deserve.However, I want it for everyone, not just those who have a type of disability similar to mine.Until people (including those with long-term illness and physical disabilities) realise that that people with learning disabilities are just as deserving if not more so of respect and acceptance the fight for it isn't going to be over.It seems to me that we've only just begun.

If we respect those with a physical condition but not those with learning issues, we are just as bad as those able-bodied people we were complaining about.Something that is nothing if not hypocritical.

Lucille, I know chances are you will never read this but I just wanted to let you know how glad I am that you are in my life.You are one of the strongest people I know and you have a talent for helping me without realising it.Love you honey xxx

Tuesday, April 04, 2006

fancy schmancy

Like our new look? Go thank Heather (Heart Mom), who donated the template, or go visit her web design and hosting company, Swank Web Style. Heather's also started a new webring, Miracle Moms, if you'd like to join up.