Friday, September 27, 2013

Advocacy 101: High Expectations for Responsibility


When the advocacy series started, we had no idea how popular it would be!  After covering topics like the History of Advocacy and People First Language, we are just scratching the surface of tools available to help become a better advocate.  There are many more topics to cover that will empower you to become the best advocate possible.  This week, we will cover the importance of having high expectations for those with a disability.  It's more powerful than you realize.

By having a child with a disability, a parent typically takes on more responsibilities to help the world accommodate the child.  That is well and good.  However, the child should not be removed from the responsibility of learning what the world may require of them.  They might need certain tools to have the best possible chances at doing that.  A person using a wheelchair to leave their home and access their community is utilizing tools just as a person who uses glasses to see better.  A person who needs a visual to verbal keyboard to speak is using technology to enhance communication just as a person may use an ergonomic pencil gripper to improve their fine motor skills.  We ALL need certain tools in this world to help us function better.  We ALL deserve to have full access to the world and the responsibility it requires. 

Why is it so difficult to expect responsibility?
That being said, once we have those tools, the expectations for typically developing children to thrive in the world are high.  Why should the expectations for a child with a disability be any different?  As parents, we think we are helping when we assume their responsibilities and chores.  How will they develop these skills if we do everything for them that we think they can't do by themselves?  Here is a prime example from Disability is Natural:

"Parents may believe a child's disability prevents the child from participating in the typical routines of childhood.  But often, we just haven't provided the child with the tools to make it happen (communication device, independent mobility, other assistive technology devices, environmental accommodations, or anything else). ... When we don't encourage and provide typical experiences (and have high expectations) we're robbing a child of the 'right' - the opportunity - to lead a real life."
Kathie Snow also shares a powerful and moving example of responsibility inclusion in action:
"I'll never forget the morning I repeatedly yelled at the then ten-year-old Emily to get her room cleaned up once and for all.  Eight-year-old Benjamin wheeled up to me and, in a hopeful voice, asked, "Mom, do you want me to clean up my room, too?" This whack on the side of the head made me realize that I had not given Benj the opportunity to be responsible. "Yes!" I replied. "Get in there right now and don't come out until your room is clean!"
He wheeled to his room and put some of his toys in the bins on his dresser. Then, near tears, he called out, "Mom, I don't know where some of this stuff goes."  How could he? His dad or I had always done it for him.  What a lesson from a child!  Things changed after that.  Later, did Benjamin sometimes whine about having to clean his room? You bet! What kid doesn't?  But he needed the same opportunities as his sister, even if he did things differently."  (Disability is Natural)

Benjamin can teach us all a valuable lesson.  We need to instill a sense of responsibility in our children so they can grow to become responsible adults.  If we don't teach them how to develop the skills for proper hygiene or how to do the dishes or hold a fork to eat, they will not have these skills as adults.  Don't discount their right to have the same responsibilities as anyone else.  Yes, they may need to complete the task differently, but they can still complete it when provided with the proper tools and learning opportunities. 


The toughest thing to realize is that our own attitudes and beliefs are preventing many with disabilities from experiencing a fulfilling life.  We may not believe that a person who has a mental or physical disability can complete normal tasks.  We limit their responsibilities before they even have a chance to try.  We set them up for failure when we should be teaching them how to succeed.  Again, how will this translate into their adult lives if they are not given a chance for success as children? 

Restriction: Tommy's mom feeds him at every single meal, because she fears he will make a mess and will 'fail' at the task.
Resolution: Let Tommy learn to use a fork and try to feed himself.  Sure, it will be messy, but think of the independence he will experience.  Isn't that worth cleaning up after?  After practice, he will become more skilled at the task and not make such a mess.  He will also be getting free 'therapy', because he will be practicing motor skill techniques for each meal. 

Restriction:  Sally has never had to do chores at home, because her parents didn't think she could do it correctly or she would get easily frustrated and have a melt-down.
Resolution:  Have Sally complete an easy task and build up to more difficult ones.  Let her start out by sorting the clean laundry (we all know it can just sit there on the couch for far too long).  She doesn't even need to fold it; Just have her separate who has which clothes.  If she makes a mistake, it is very easy to correct.  Once she finishes this task, praise her and then ask her how it feels to have helped mom with her housework.  Once Sally realizes that she CAN be a contributing member of the family, she will be more likely to take on more difficult tasks.  Next,she can learn how to separate clothing, as well as fold pants or match socks.  The list becomes endless as long as Sally is taught the expectations for each task and can practice frequently.  Sure, there might be a spot missed when vacuuming or a dish or two might get broken in the kitchen, but Sally is learning teamwork and developing life skills she will need to become an independent adult. 

If you need some ideas for how to make this happen, ask in the comments below, or search online.  As an example, I would like my son to help me with cooking and meal preparation.  I was quickly able to find a post on how to adapt cooking with a physical disability. I was also able to locate a neat measuring and preparation set for him called the Match Cooking Prep System designed by a 23-year old woman who has a brother with autism.  This set is AMAZING and would really benefit any child or adult learning to cook!  There are many different resources, ideas, and tools available if you have the chance to research a bit.

Having high expectations and removing the stigma of the disability label is a HUGE step to take as an advocate.  Remove the negative stereotypes that the label puts in your head!  Remember, they are not a label of their disability; They are a PERSON FIRST!  The person you advocate for is putting an enormous amount of trust in you; It's time to reciprocate that trust and help them enjoy the 'normal' day-to-day experiences that most of us take for granted.  Empower them to become the best possible PERSON they can be!!

By commenting below, please share a task where you had been hesitant to let the person with a disability in your life try to attempt.  Why had you not allowed them to complete the task by themselves?  Can you share a way you taught them how to complete the task even if it was in a non-traditional way?   
-OR-
If you want to share a situation where you may need help on how to increase responsibility for a certain task, we will all be glad to give you some useful ideas.  Thank you!!

Many thanks go to Kathie Snow, for providing such an in-depth foundation for advocacy knowledge!

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Leslie M. never thought in a million years she'd be sharing such important knowledge to so many important people.  She LOVES post comments, foot rubs, and a nice quiet Sunday morning with a cup of hot Chai tea.  At best, she only gets 1 out of 3, but you can help make her dream a reality! No foot rubs or in-house visits necessary.



All information listed in this series, unless otherwise specified, was referenced with information provided by the Oregon Council on Developmental Disabilities (OCDD) Partners in Policymaking (PIP) program.

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