We want a Level Playing Field

A LEVEL PLAYING FIELD

A situation in which everyone has a fair and equal chance of succeeding.

Has anyone who has a disability or looks after a family member with a disability noticed how there are different rules for them than for everyone else?

When Miss Chloe's dad committed suicide a few years back, his superanuation group were not going to give her what was rightfully hers, because she was 18yo and I was not her legal guardian. I called the VCAT to inquire about the process. When it was described, I was mortified and disgusted...talk about degrading and humiliating! When I mentioned this to the lovely man from VCAT, his response was: 

"Families of people with disabilities are GUILTY UNTIL PROVEN INNOCENT
Seems they are the only demorgaphic in Australia to have this honor! 
Because SOME people rip off their loved one  with a disability...
Some people in general society murder and rob others,but that doesn't change the premise of innocent till proven guilty for the rest!
Needless to say, I am still not her legal guardian!

Fast forward to recent times...NDIS times
Now this is an organisation that has successfully removed any semblence of fair play when it comes to the people they are supposed to be helping.

1. They have changed the concept of 'Fair & Reasonable' from being about the participants needs  to being about how fair & reasonable it is to the NDIA.
   
2. No participant is allowed a copy of what is being submitted from the plan to the  NDIA.
3. No participant has the right to refuse their plan and be reinstated with their previous supports     (they can appeal, which can take up to 6 months) but they still only have what NDIA has given them.
4. They refuse to give the participants any information on how they arrived at a plan that is nothing like was talked about in the meeting, when the participant needs to appeal or have a review done.
5. You never, ever get to speak to the same person twice and you never get the same information twice! The running joke around the ridges is:               If you don't like the answer, just call again!

Now they have created a new policy: A participant is not allowed to record their planning meeting, about themselves for their own personal records. 

Frightening, considering the police have informed us:

ANYONE is entitled to do this, as long as they let everyone in the room know they are recording it. If the planner is uncomfortable, NDIA must supply another planner....

  BUT the NDIA doesn't care about this entitlement, They have said no and that is that. So now there is absolutley no way for a participant to even know what was discussed in the planning meeting if they need to appeal or have a review!  YET, the NDIS has all the information when making their decision on the blind request for review....

GROSSLY UNFAIR!!!!

Apparently, we are allowed to take notes, but it is very hard to scribe a 2.5 hour meeting and are the planners going to sign off on the notes so the participant has a record that they are true and correct?    
Hummmm, we shall see..........

The time has come for participants to stand up against the inequality and demand we get given the same rights as everyone else.

The Federal Government needs to take some responsibility here and make the NDIA allow participants the right to have access to all the information they need when needing to submit a review or appeal.

A LEVEL PLAYING FIELD FOR ALL

Carers are not machines

With the advent of the NDIS, it seems the unpaid carers are not being recognised to their vital role in caring for their loved one.
The NDIS is all about the person with the disability and their needs and this is a good thing.
To begin with, the planners and NDIA didn't take the welfare and well being of unpaid carers into account at all.
They realised, rather quickly that if they do not look after this group, people with disabilities are going to cost Australia millions more then it is now, due to carers not being able to manage or cope.

In saying this, unpaid carers are treated like machines....

• No you are not entitled to timeout from your duties as a carer...
• What do you mean, you need  time with your other family members?
• Why should you have down time for yourself?
• Of course you can't have a holiday without our loved one with a disability.....
• You are lucky you get anything.......

And the list goes on........

I find it interesting how many people leave the industry after a certain amount of years, due to carer burnout, yet they don't truly get that unpaid carers don't have the  luxury of leaving in spite having carer burnout ( unless they relinquish their loved one).

 Isn't it time the unpaid carers are truly recognised and rewarded for what they do for this country?

Isn't it time the carers are included as part of the solution - not seen as part of the problem?

Even machines break down, if they are not well maintained

If the NDIS & Governments continue to only pay lip service to the unpaid carers, the NDIS will go from a preventative program to a crisis program very quickly and we are back to the dirty old system we had before. But worse, because we spent all this money on the NDIS to have..the same old, same old...

We need to ensure the carers are well supported whilst carrying out their selfless duties

www.idareu.org.au

We all need time with our mob

Have you ever noticed how sometimes, out of the blue, we feel a need to contact someone - a family member or an old friend; attend an activity or an event, which simply makes us feel good for no reason other than it just does?

Humans are known to be creatures of a pack and so by nature, we don’t operate well in isolation.

The emergence of NDIS, seems to have created a tendency for one-on-one (individual) support, where a person with a disability is being taken out from their group setting to receive one-on-one support instead.

Don't get me wrong here, one-on-one support is wonderful and many people with disabilities can learn quicker, have access to the community around them easily and, with more dignity when receiving this type of assistance.  There is also the benefit of more flexibility as activities can be tailored to a person’s needs and passions.

However, the biggest problem with one-on-one support is the tendency for isolation to creep in, as there is no avenue for interaction with like-minded people.  This lack of interaction, makes it difficult for such individuals to develop socialising etiquette with others, namely members of the public, and could eventually cause mental health problems.

I tend to see it as spending time with their 'mob'.  We all know there is just something about this that makes people feel wholesome including people with disabilities.  They don't have to be with their 'mob' all the time and it doesn't have to make sense to anyone else...but they do need this time.  Be it once a week, thrice a week, or even once a month.......

We often hear from families with intellectually disabled children, that one of the issues their children face when attending mainstream schools, is difficulty in making ‘real’ friends among their peers.  We need to find a way to give these children an opportunity to spend time with their 'mob' and create a sense of belonging among them.

Chloe Dymond has a candid way of introducing herself when asked where she is from - she always responds saying she 'Comes from Down Syndrome'.  I simply love this phrase, as I think it gives her that sense of belonging, and I visualise “Down Syndrome” as just being another country, with people of different views and cultural backgrounds.  Similar to how many immigrants build a sense of belonging through community centres that reflect their ethnic origins and have a tendency to gravitate to suburbs where people from their country of origin  tend to reside.

Chloe needs to spend time with people from her ‘country’ to feel connected to the world.

I hope the NDIS does not take away these people’s opportunity to 'recharge their batteries' with their mob and further reduce opportunities for the general public to engage with people with disabilities, and learn from them.  Collectively, families who have people with disabilities, need to work together to create a healthy lifestyle balance, for the people we care about, as well as play our role in educating others on creating an inclusive society.

www.idareu.org.au

Dear Doctors, ENOUGH!!!!

This is a letter from my book 'Removing the Fear of Raising a Child with Down Syndrome - Waising Miss Chloe' .Sadly, it is more relevant today than it was 4 years ago, with the advent of the Down Syndrome blood test imminent in Australia.

Please don't allow Australia, to go the way of Iceland and eliminate a group of people because..well no-one really knows why they have to be eliminated.

Open letter to Doctors and Obstetricians.

My name is Sue Dymond and I have a young adult daughter who has Down Syndrome.

Fortunately for me, her and all who know her, I was too young to have the amniocentesis when I was pregnant. I say fortunately, because when my baby had tested positive to Down Syndrome, I would have terminated the pregnancy. I wanted nothing to do with a disabled child and all the hard work I imagined went with that job.

If this had happened, I would have missed out on knowing one of the most pleasant, self-assured, calm and confident young women I have ever met.

I find it very, very sad in the 21^st century that there is still such a strong bias by the medical profession towards termination when Down Syndrome is detected prior to birth. It is very important that we are open-minded and give parents a balanced view of the positive and negative issues surrounding raising a child with Down syndrome.

NEVER ASSUME; not all parents want to terminate, and the reason many others do, is because it is painted as such a negative, unusually an incorrect outlook of theirs and their child’s life.

I can fully understand this attitude 30 or 40 years ago, but today, when there are so many young people in society with Down Syndrome proving to all around them that they are very capable of learning and being productive people in society. Admittedly they need some guidance and assistance, but I would love some one to tell me which child doesn’t?

An interesting statistic from an Australian survey conducted in Feburary 2013 by Sue Blandford, Down Syndrome Victoria, shows: 53.5% said their child's health had been mostly excellent since birth, my daughter is one of those statistics. 

This is over half of all babies born with Down Syndrome being healthy, so why are we advised to terminate on a less than 50% chance of having an unhealthy baby?

Yes, I found the first ten – twelve years hard work, with running around to lots of experts and professionals and teaching her basics, boundaries and consequences. I have to say though, the past ten years she has been a delight (well mainly).

She does volunteer work with Meals on Wheels, she helps an organisation feed the poor every second Tuesday, she has a black-belt in Karate and is a helper teacher. Yes, she still needs guidance and I imagine always will need some, due to her inability to manage unforeseen circumstances.

I was recently told by a friend that I have everything a parent would ever ask for with Chloe. I have a child who loves me and enjoys my company and visa versa. 

Our journey has had its challenges and will continue to, but isn’t that true of anyone who has children?

More than the challenges though, it has been rich with learning the important lessons in life – and some of those lessons are not true of anyone who has children. They are a gift to those who have a special needs person.

I ask the medical profession to please become more learned about what happens to people with Down Syndrome after they leave your care and then deliver the balanced information to parents who find out they are expecting a child with Down Syndrome.

As I mentioned at the top of this letter, the world would have been a way less rich place, if my choice had been different based on knowing that Chloe had Down Syndrome before she was born.

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Carer Tips - Prepare early for independance

We all want our children to be independent (not dependent upon us). It is most parents biggest dream AND fear.

Sadly, although many dream of this, not as many actually implement strategies to teach and maintain the taught practices to their person with a disability.

There seems to be a belief that they will do everything for this person and one day, they will just morph and become totally independent!!!!

Intellectually no-one believes this BUT in reality, this is what happens time and time again.

Below are some tips, if this sounds like you, but you have no idea where to start:

• Start early: Start as early as possible, ensure the task is suited to age. Instead of asking what your two years old would like to have read to them, show them a book in each hand & give them the choice of 2
• Build confidence; As they get older and conquer the required task, add another & another, don't stop, because they can have archived one thing
• Goal setting; Set 2 - 4 goals per year to be taught
• Empower; STOP being their mouth piece. Every time you speak for them, you are telling them they are not important.
• Priorities; HOW IMPORTANT IS IT? Is it really a major disaster if the clothes are not pegged properly?
• Teach; the old-fashioned things; like washing up and drying the dishes. Even if you have a dishwasher. It the skills you are teaching - not the convenience
• Communicate; Teach from the level they understand; not try to get them to understand you, use short sentences and only 1 or 2 instructions at a time.

Over time this becomes a complete task, achieved by them with your support.

This is just the tip of the iceberg. Next blog will be more tips towards independence.

Meanwhile pop over to the iDareU website & check out what is going on

http://www.idareu.org.au/

Carer Tips - going the distance better!

When a loved one is first diagnosed with a disability, people tend to go into shock for a while. From there, it is full steam ahead, as they madly chase around to find the very best outcomes for the person. Many carers remain in this mode and even when things are calmer, they find things to keep them at the crisis-driven, edge tipping point.

This way of living is unsustainable over a long period of time.

The direct results are Carer burnout, not being able to cope with unexpected issues, mental illness, isolation, relationship breakdown and many other uglies.

Being an unpaid carer is NOT a sprint, it really is a marathon and people need to learn to pace themselves to ensure a good quality of life.

Here are some simple tips to assist with finding and keeping balance in your lives

When things are not in crisis, relax 

This is the time to recharge your batteries. Have a long walk, or bath, or read a book or anything else you find pleasurable. The housework and other non-urgent things will keep.
Many people find themselves playing housework catch-up when their loved one goes to respite instead of relaxing.

Restoring your energy is more important than a clean house!!!

Create a sustainable plan

NDIS has come or is coming. Ensure your plan is not just a crisis avoidance plan. That is how you live now. The plan needs to be looking at sustainable and healthy living for all. This is the only way for Australia to save money in the long run.

Allow and ask for help

Being all to everyone ensures we will burnout. It is not a natural way for any relationships. Give your loved ones your best and outsource the rest. This way, you are able to enjoy the people closest to you and not be caught with those ugly friends called: RESENTMENT & GUILT.
Don't assume people will say no. If you don't ask the answer is guaranteed to be NO. If you ask, you have a 50% chance the answer will be YES...

Remember the gift of giving. 

Don't deny others the opportunity to give to you and your family, as you are denying them a precious gift.

Laugh & Meditate

Two very simple, yet effective ways to help yourself and give you more energy and reduce your mental stress. Yes, you DO have time....you don't have time NOT to do these things.
Meditation need only be 15 min a day to start with...in the shower, if need be.

Go on - give it a go......


iDareU has teamed with some amazing people to bring you a host of  Living Well - Taking Care of ME workshops.

Go to this link and see if anything strikes a cord with you. If it doesn't strike a cord - sign up for the Carer Kit one anyway, you may need a kick start...

http://www.idareu.org.au/happenings.html

'Difficult' carers do not have permission to abuse our disabled loved ones!

I recently read a book titled: 'I've been good so far' by Joan Reid.

It is not an easy read, as it highlights the reluctance within disability land of anyone to protect our most vulnerable.

'Floss' has complex and challenging needs. She became too hard for her family when she was 13 years old and they put her into 'care'.

This book really shines a light on what happens in some of these so called community houses. And no, I am not saying all community houses are the same. I am saying, due to such tight budgets, there are a lot of places that hire people with very little or no experience to work with people with disabilities who have complex needs.

Poor Floss received so much shocking treatment in more than one of these houses, mainly due to her inability to carry out the tasks she was expected to without help. The other tenants loved ones wanted Floss out as a result of the welfare organisations finding it too hard to enforce things to keep her safe. And the services also decided her mum was difficult, therefore Floss' punishment was justified.

Floss endured many years of poor treatment. The book covers the period from 1981 until 2013, which means that 'the olden days' can't be used as an excuse.

I remember when Miss Chloe was around 12 years old, my regular carer was a way for 6 weeks and we were given a replacement during that time. I was very rigid with her bed time and explained to the carer that Chloe needed to be in bed at 8.30pm. For 3 weeks, I would arrive home at 10pm to find Chloe just going to bed (she had to be up for school at 6.30am). I was so frustrated that no matter how many times I told the carer she just would not listen. The carer would simply say 'She (Chloe) didn't want to go to bed', 'She (the carer) can't make her'... Blah, blah, blah.

I explained she (the carer) didn't have a choice. This woman was the paid adult and all she needed to do was tell Chloe at 8pm that is was 8.30pm and that she had ten minutes to be in bed. Chloe couldn't (and still can't) tell the time. This way, the carer was guaranteed that Chloe would be in bed by 8.30pm.

The carer didn't take any notice of this information, so the next morning when Miss Chloe got up she was very distressed telling herself she was a very bad girl and started hitting herself (Miss Chloe always self talks and acts out what people say and do to her).

Eventually I got the gist of what was happening. The carer had verbally and physically abused Chloe.
I notified my case-manager, who contacted the organisation the carer worked for. The response the case manager received was: "No we won't be following up because 'HER MOTHER IS VERY DIFFICULT, YOU KNOW'. Apparently it was OK to abuse someone if their mother was not the complimentary type and made life difficult for the organisation!

A lot of Floss' issues were exactly the same! Poor Floss was punished because her mum would not accept substandard treatment of Floss. And sadly, these are not isolated cases. I am often hearing of family members who are banned from visiting their loved ones in their residence because the families have complained, been concerned, or questioned things about the care their loved ones were receiving.

I hope and pray that the NDIS will make these organisations more accountable once they realise the concerned carers/families won't be trapped any more. I hope we will be able to have more flexibility around who cares for these very vulnerable people.


idareu.org.au

The Art of Giving

There are so many ways of giving. We can give our time, our love, presents, donate to causes...the list goes on.

But to me, the most generous and kindest way of giving is to give from the heart and to give unconditionally. This is not at all easy to do - although I am sure this is what we THINK we do.

I spent many years believing I retained some type of ownership over whatever it was I was giving to someone else. If I gave you a present, I would be really hurt if you:

a. Didn't like it
b. Gave it away
c. Threw it out

I would even be silly enough to ask if you liked it (expecting the answer to be yes). Please don't ask this question if you are at risk of being shattered.

A wise person once told me, "Sue, never ask the question you don't want to hear the answer to". So today I tend to say: "I hope you like it, but if you don't you are free to do as you please with it".

It totally removes my expectations and the receiver's sense of guilt.

This is also true of giving your love away. To be able to love unconditionally, we need to learn that it is not up to us to put conditions on that love. You know what I mean; 'If you love me, you would/wouldn't...' 'I love you but...' and any others you can fill in yourself. These are not words of love, they are words of emotional blackmail and are not at all loving.

If we are not comfortable we can tell them so, why ask if they could change? And if they don't change, then it is up to us to decide what we do - not continue to try to make them adjust! And yes, that is tough! But it is much tougher trying to mold someone to your requirements when they don't want to be that way.

Then we come the the gift of time - doing things for others. This is ONLY a true gift if you again have no expectations on the outcome and are doing it because you want to. If you find yourself resenting doing things for others, know you are not doing it for love. Love and resentment can't live in the same space. Or, even worse (I believe), is when someone does something for you, then they keep it to use as a lever or bargaining chip later on.

'Well, I looked after your child when they were sick, so you SHOULD lend me your car.'

'Remember when I came and picked you up from the city? Don't get angry at me for forgetting to pick up the child from kinder.' 

And many more...

To truly give from the heart, we must give with an open hand, not a clenched fist. Once it leaves our hand, it is no longer ours. We can no longer decide how it can be used or what happens with it. It has become the receivers gift to accept and all we can do is pray that they receive it with the same loving intention it was given with.

It is very freeing to give with an open heart and hand and it allows us to 

                                                  rejoice in the art of giving.


iDareU

The NDIS Rollout – More than an inconvenience for too many

As anyone who reads my blogs knows, I am a massive fan of the National Disability Insurance Scheme (NDIS) – once it is rolled out and working properly.

What you may not be aware of is that I am extremely nervous about the journey in getting to that point.

I regularly mention in the Imagine Better workshop that I see the process of the NDIS as a long renovation that will produce a much better product than it was before the renovation. And like with any renovation, we are going to have to put up with the mess and inconvenience whilst the renovations are happening.

What I failed to mention is that whilst we are being inconvenienced, we still have a roof over our heads and we are not in any danger of falling off the edge.

Since the introduction of the roll out of the NDIS I have heard some frightening things that are happening, including:

• A 15km limit on the distance you are allowed to travel to get a service and that service providers are allowed to travel to a client.
• Services being removed from a person before the NDIS is in place – leaving people with nothing.
• Inexperienced planners preparing incorrect plans and people being left out in the cold with nothing and nowhere to go to get help or answers.
• Making self-management of the funds so convoluted and paperwork heavy that no client can navigate them.

Although there is a phone number you can call, unfortunately I know from experience that the wait on hold time is insane. I was on hold for 96 minutes and in the end I gave up!

I seriously hope these are isolated issues that are being resolved very quickly, as they are completely unacceptable.

If even a few of these issues are true, many people are going to be tipped over the edge and there will be many more bushfires to put out in the disability community. There are already so many vulnerable people trying to keep it together, it really won’t take much to have them lose their grip on that tiny piece of string that barely holds them together.

I have a dream that the NDIS will be the end of a crisis to crisis driven industry – as the current system is. We are not helped until there is a crisis and because the crisis is being created by not helping those who just need a little bit of help, the crisis are not being managed, as there are too many that the system has created.

The NDIS is meant to be all about giving people with a disability the power to live their lives with dignity, empowerment and choice. It was conceived to remove the shackles of the antiquated system we have endured for far too many years.

As the Productivity Commission said in their report: ‘The system in place now is so broken it needs to be thrown out and completely started again.' Hence the introduction of the NDIS.

Please don’t make this a repeat of the old system with even more pain. People with a disability and their carers deserve more than the scrap heap. We deserve a safety net to be put in place to ensure we are not worse off whilst this mess is sorted out.

Come on powers that be, get working on a transition with dignity – because we certainly deserve it!

iDareU.org

Community Inclusion - The Norm

iDareU recently hosted a Community Fair. People with disabilities sold things they created alongside small businesses in the community and iDareU selling lots of amazing, pre-loved things.

We made a decision to not use the word 'inclusion' anywhere in the advertising. "WHY?" - I hear you ask. Inclusion needs to STOP being an announcement and needs to become so common and natural that no-one notices.

People who have a disability and their families live in a community of some sort. They are mainly in suburbs or towns or districts and co-habitat with everyone else. So WHY then do we need to make a fuss when people with a disability join with other members of their community to do something as normal as selling their goods (whether they make those goods themselves or source them)?

I loved the story from Dylan Alcott - Australian Open champion and quad wheelchair world No.1.
He tells of a well-meaning woman congratulating him on the way he smoothly transitioned from airplane seat to his chair. He found this a bizarre comment, as this is what he always does - his wheels are his legs. He lightly made the comment that he almost congratulated her on the way she made her way from her seat to a standing position to leave the plane.

People with a disability are not heroes because they do what comes naturally to them, they are just a normal person. A person who mainly lives in a diverse community and tries to make the most of what they have. The time has come for community to not only embrace people who are different but to just accept them and love their differences...whether they be disabled, immigrants, have different sexuality, whatever! A community that embraces diversity is indeed a much richer and more tolerant community then one that repels it!

So lets all make a concerted effort the next time we plan a community event to invite and include all involved in your community to participate, and to not make a huge song and dance about the fact you are being inclusive but be natural. This way we teach others to do the same.

Lets all be a part of making community inclusion the norm!

iDareU
Sue Dymond

The wind beneath my wings

I have recently been presenting workshops for Carers of people with disabilities. These interactive workshops are very casual, yet it amazes me that a large group of people can sit in a room and listen to someone speak for a couple of hours, then get up and leave without connecting with anyone else! However, when you ask people to introduce themselves and actually include everyone in the process of the workshop, the chatter with new friends in incessant!

There is a section where attendees can discuss their fears around their loved ones with a disability. They then have to come up with something to remove that fear. The astonishing thing about this exercise is that when people start discussing their fears, they realise they all have the same fears! And right up until this point - they thought they were the only ones, that they were weak or crazy for having such fears! All of a sudden a huge weight is lifted, as they realise they are normal and like everyone else. I don't believe there is anything more healing for the soul than to realise you are not alone on your journey and there are people like you that are willing to walk beside you.

The most important thing about a Community is talking to each other and finding out we are much more alike than different. I have previously spoken about becoming part of a greater local Community, but you should never underestimate the importance of becoming a part of our disability Community. I like to see this Community as my Tribe. My tribe does not have to have a loved one with Down syndrome, they just have to have a loved one with a disability to be able to connect with me on a very different level to someone who has never walked this path. These are the people I don't need to have my 'happy face' painted on for. These are the people who really GET IT when I say I just want to run away.

These are the people who are the wind beneath my wings. They help me fly, as well as allow me to grieve and even throw a tantrum.

THESE ARE PEOPLE WHO ALLOW ME TO BE ME and for that, I thank you!

Sue Dymond
iDareU

The Invisibility of Disability

Have you ever noticed when you are out shopping with your loved one who has a disability that retail or hospitality staff will ask YOU what THEY want?

Miss Chloe has always watched them to see whether I am going to speak for her AND if I do...she has ALWAYS contradicted me!! I spent a few years feeling guilty that I was 'wasting people's precious time' waiting for Chloe to get the words out. I also felt it was my job to not have them feel 'uncomfortable or embarrassed'  because they didn't understand her the first, second and sometimes third time.

I am so grateful for her tenacity because she taught it SHE WAS WORTH IT!

I was unconsciously telling her that strangers were worth more then her when I spoke for her or tired to hurry her up. It is a long time since she taught me this and every retail or hospitality person EVENTUALLY gets what she is saying and today, I see THAT as customer service. They are learning a great lesson in respect and patience as well.

So next time you speak for your child KNOW you are telling them you don't think they are capable.

I watch Chloe sometimes and it never ceases to amaze me when she is shopping or trying to buy something from a food court, how many times staff see straight through her! She is a polite person and will just keep standing there...waiting, waiting, waiting until eventually a customer will say; "I think you are next".

It is very sad that she (and others with a disability) are invisible to most of society where transactions take place. There seems to be this concept that they wouldn't know, so we will just wait for the carer/person with them to come and tell us what they want.

Chloe was asked to leave a bookshop once because the owner ASSUMED she was under 12 (she was 17). When asked why he didn't just ask how old she was, he looked at me with this look of shock...I really don't think he thought she could talk, so he didn't bother finding out.

We were at a market once in Melbourne and Chloe was buying a t-shirt. She was holding the t-shirt and was in front of me. I was talking to a friend and the stall holder leaned over Chloe and tapped me on the shoulder and asked if I needed anything.

Rather annoyed, I pretended I didn't know Chloe, pointed to her and her t-shirt and suggested it looked like SHE is the next customer!

I spend a lot of time pretending I don't know her and suggest SHE is the customer, so maybe they should ask her...

Another issue we have is the height of the benches in the food courts. They are so high, that even when the service person eventually sees Chloe, they can't understand her because there is so much glass between her and them on the other side. I also found this an issue when I had my stroke and was in a wheelchair.

Perhaps Customer Service staff need to be trained to never assume and maybe some clever inventor will create a disability-friendly way of making the retail and eating out experience more enjoyable for those who are not the generic size, shape or look!


www.idareu.org.au
www.suedymond.com

Let the Mountain come to you

Recently I was involved in a Regional Toastmasters competition where the standard of speeches was exceptionally high. However, there was one speech that really resonated with me and my life.

The speaker was speaking about mountain climbing and how he kept looking up to see how far he had to go or looking down to see how far up he was. He had a very experienced guide with him but there came a point where he was exhausted and KNEW he couldn't make it all the way to the top. The guide came over to him and quietly said;

"Just worry about your next step and when you have done that one, focus on the one after that. Before you know it, the mountain would have come to you."

WOW...what amazingly wise words. How many times in our lives do we look so far ahead, not noticing there are many steps to be taken before we reach there. Once we set our goal (whatever the goal may be), we need to come back to the now and just deal with the very next step. Every time I do this, I am amazed how easy the complete task has been when it is finished, one step at a time...

With Miss Chloe, I was so overwhelmed when she was born, worrying about what her life would be like when I was gone - I just wanted to hide. This has turned out to be a complete waste of time and energy. I have lost quite a few precious peaceful days worrying. The strange thing is, as every day passed and my little girl developed from a baby, into a girl and into a woman, I have realised that my mindset is nowhere near the place it was when she was born. And her life is wonderful and complete and she will manage exactly as she is supposed to!

Chloe loves her life and feels complete (yes, eventhough she has down syndrome - she doesn't see this as a big deal). She achieves many things that are just out of her capabilities AND she just focuses on the next step. She has had many mountains to overcome in her lifetime and I am sure there will be many more to come.

So, the next time you get an attack of the 'CAN'T or QUIT' just remember - the only thing you need to worry about is the next step, AND before you know it, your mountain would have come to you!

www.idareu.org.au
www.suedymond.com

Many disabilities DON'T have a wheelchair

There seems to be this very strange practice creeping into society at the moment. It is also very disturbing!

People with disabilities are coming back to their cars to find rude notes attached to the windscreen.
They have been parked in a disability spot, they have a disability permit to park there and yet people are taking it upon themselves to write nasty little notes.
These notes are stating the obvious....You are not in a wheelchair.....blahblah…..

I have a couple of issues here and I would like to address these people who feel it is their civic right to behave in this manner.

1. SURPRISE!!!!!!! The wheelchair in the image is ONLY to let you know it is a DISABILITY car park...it is NOT A WHEELCHAIR ONLY car park!!! Therefore if a person is NOT in a wheelchair, please don't assume there is nothing wrong with them.
2. If you are that concerned, why don't you actually approach and ask the person (politely) if they have a disability??? Yes, a novel idea, I know…What? TALK to them and have the issue cleared up? It is much more powerful to assume the worst and leave a message on some vulnerable persons windscreen.  This is just a type of bullying - dressed up as doing your civic duty. If it really bothers you - speak to the person.

People who have a disability that can't be seen clearly have a hard enough time trying to navigate this complex world we live in. Perhaps a little kindness would be a good replacement for this type of behaviour.

It is the same with public toilets. Miss Chloe has a disability, but can walk. I can't tell you how many people give her dagger looks when she goes to the disabled toilet...
They believe the wheelchair sign means it is ONLY for people in a wheelchair.

It seems there needs to be a big campaign around re-educating society as to the meaning of the disability logo.

COME ON big advertising companies, how about you do a huge community service and create a funky ad around this concept?

iDareU to help make our most vulnerable and ill count.

PLEASE REMEMBER NOT ALL DISABILITIES INVOLVE A WHEELCHAIR. SHOW COMPASSION AND EMPATHY INSTEAD OF CONDEMNATION AND JUDGEMENT!!!

Click here to find out more about iDareU
Click here to find out more about Sue Dymond

Let them Flap till they Soar

iDareU recently hosted a workshop to assist carers of loved ones with a disability to become 'naturally' involved in their local community. I decided to eliminate all the 'YEAH BUTS' and other excuses why this can't be done at the beginning of the session. There wasn't one valid reason for not being involved in the local community.

The most interesting thing that came out of the workshop was that 'we' (the carers) are the biggest obstacle to allowing our loved ones to become involved in the local community. It's amazing how often we think we need to protect our children from the 'big bad world' and inadvertently make them dependent upon us. We just KNOW if we allow them to become travel trained they WILL be bullied or worse….We KNOW if the train isn't running, no-one will help our loved one...This is so sad…It is just as likely that the OPPOSITE will happen.

Miss Chloe has been out on her own in the community for approximately six years now and not once has she been bullied or ignored. In fact, she will go up to a person, hand them the phone and tell them her mum wants to speak to them. They will let me know the situation and then watch out for her and make sure she gets to the right place. Many times she has asked school kids....zero times have they treated her badly.

Now I'm not saying that bad things don't happen in the community…But I AM saying:

NOTHING CAN BE WORSE FOR US OR OUR LOVED ONES THAN KEEPING THEM WRAPPED IN COTTON WOOL AND NOT ALLOWING THEM TO LIVE!

Life is all about taking risks. Risk taking is how we grow, become empowered and gain self-esteem. Please don't take this powerful gift away from your children because you fear they CAN'T.... Or because you believe they need protecting from EVERYTHING. Get the local community on board and create a safety net, allowing your loved one to take risks and learn to fly.

A mother bird will push her baby bird out of the nest when it's time for her baby to become independent. They have no idea they can fly until they awkwardly flap their wings about - heading for the dirt. But they keep trying and before they crash, they get the flying thing worked out and they soar.

Isn't it time to let your loved one flap around and learn to soar?

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