Monday, February 29, 2016

How Do People with Disabilities Learn?

It's the last day in February, so it's fitting that it is also time for the last of the commonly Googled questions about disability:  How do people with disabilities learn?

{Image is: Me sitting at a desk in school during kindergarten or first grade.  I'm half turned toward the camera, smiling.  Photo credit: a teacher, perhaps?  Around 1987.}


I can really only speak for myself here, but I learned the same way other children learned: I went to school.  Just like other children, there were some areas where I excelled (reading and writing) and some where I really struggled (math.)  I had accommodations made with regard to certain things: sometimes my assignments were shortened, because it took me a long time to write.  For a while, I typed my written work rather than writing it longhand - in the '80s this was pretty novel.  Sometimes I had adaptations to my desk, to make it easier for me to sit in.  I had certain grips for my pencils, and scissors that were easier for me to maneuver.  In gym class, exercises were adapted for me, so I was not expected to do jumping jacks standing up, for example

While all kids with disabilities aren't like me, kids with disabilities may require a degree of accommodation in school.  Contrary to popular belief, accommodations are not synonymous with special treatment.  These accommodations make it possible for us to learn with the same relative ease as typical students.  Typical students wouldn't be expected to learn home economics or wood shop at stations that were too high for them, would they?  Lowering the height of that station, or seating them in a place where they could reach everything would not be considered giving them special treatment, it would be about adjusting things to make it possible for that child to learn.

Not all accommodations look the same for every child, because there are different disabilities, and different presentations of each disability.  For example, someone who is autistic might require a testing space that is quiet and separate from the other students.  A student who has sustained a brain injury may have trouble filtering out excess noise in the classroom, and may miss a teacher's instructions.  A student with Attention Deficit Disorder might need accommodations that allow him to stand to do his work while the other children sit, because he is able to focus better that way.  A child with Down Syndrome may need to go through material at a more deliberate rate in order for her to have the chance to really absorb it.

Accommodations are unique to each child and their disability.  But the fact is that we all are able to take in new information to some degree.  Whether or not we are able to process it in a way that makes sense to you, is another matter.  We may completely understand a concept, but be physically unable to execute it because of our disability (an example I often cite is my inability to use a protractor in tenth grade geometry.  I totally understood the concept, but no matter how many times I tried, I was unable to execute the skill myself, so the teacher made allowances for that.)

It's important to always presume competence.  That means, don't speak to us like babies.  Don't speak to other people about us when we are present.  Speak to us the way you would speak to any other child of the same age.  We may need more time to process information, write answers, perform a skill, or it may be completely outside our ability to complete, but that does not mean we are not listening or that we are not trying.  

So, whether it's a teacher showing us how to add, a therapist working with us on shoe-tying or dressing, or a parent working on communication skills with their child at home: assume we understand you.  Assume we are trying our best, and encourage us in our attempts to master whatever it is we are trying to learn.

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Monday, February 22, 2016

Do People with Disabilities Look Different?

It's time the second most commonly asked Google search question regarding people with disabilities: Do People with Disabilities Look Different?


[Image is: the shadow of me in my wheelchair.  May, 2015,  Photo credit: me]


I've read about parents who get diagnoses for their unborn babies and immediately imagine a three headed monster.  A friend of myself and my sister once envisioned my sis had transformed into a monster with "slime and tentacles" after a surgery.  The truth is, what we don't know, we often fear.

The answer to this question is rather simple: yes and no.  Some of us do look different, assuming different is code for not the same as able bodied.  And some of us don't.  Some of us use adaptive equipment like wheelchairs, walkers or crutches.  Some of us don't use adaptive equipment but walk with a noticeable limp.  Some of us have facial features consistent with Down Syndrome. Sometimes, you can see the differences.

Other times, though, you can't.  People who have learning disabilities or chronic, invisible illnesses, won't necessarily look any different from an able bodied person.  People who have had a brain injury but are years into recovery might not look like they have.

Sometimes, disability is obvious.  Other times, it isn't.  What's important is, whether disability shows or not, to treat everyone in a manner that you would like to be treated.  Not how how think you'd like to be treated if you were disabled, because there are automatic biases there.  How do you want others to treat you, right now?  Would you feel comfortable if people avoided you and assumed you couldn't do anything for yourself?  Would you feel good about yourself if people constantly praised you for going out in public or asked you invasive questions? Do you think it's fair for someone to say you could go to the moon if you tried hard enough?  Neil Armstrong went to the moon, so why haven't you?  You are able-bodied and so is he, so you should be able to do that, right?  (Totally unfair.  You're not Neil Armstrong, you're you.)

Remember that, to someone who's lived with a lifelong disability like Cerebral Palsy, looking different is as normal to us as looking the same is to you.  Don't be rude, but don't ignore us, either.  If you would greet someone, casually, on the way by, greet us, casually, on the way by.  It's okay to notice us.

Our visible differences are part of what makes us unique as people.  They're part of what makes us who we are.

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Friday, February 19, 2016

My First Interview (on Growing Up with a Disability)

On Monday of this week, I got the chance to do my first interview with Ellen Stumbo!  This was a follow up to my guest post series on Ellen's blog about growing up with a disability.  We had a great conversation!

Watch, listen or read to hear me answer your questions, including:

"I was in line at JoAnn's Fabrics, ahead of a woman in a wheelchair.  She started talking about how it used to be faster because there was a line for disabled customers.  Should I have let her go first?"

"What made your teacher so mean?  The same thing happened to me." (See: The Elementary Years)

"What advice would you give a young person with CP who is feeling left out?"

"I think it would be cool to hear about your friendships during your school years..."



If you didn't get the chance to read my posts and would like to, you can find them here.

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Don't forget to connect on Facebook / Twitter / Email: toniasaysCP@gmail.com

Monday, February 15, 2016

Do People with Disabilities Have Feelings?

Back before the New Year began, I was contemplating potential blog topic ideas.  To get the ideas flowing, my sis typed a rather generic statement into the Google search box, asking it what nondisabled people most wanted to know about disabled people.  To my shock, Do People with Disabilities Have Feelings? was at the top of the results.

[Image is: Me, in my kitchen, teary eyed but forcing a smile.  Photo credit:  ME!  November, 2015]


Those of you who have been here a long time are probably thinking, "Why is she writing about this?  Of course people with disabilities have feelings!"  Yes.  We do.  (That's the answer, folks.  We do have feelings.)  The thing is, that's frighteningly not obvious to everyone.  Disabled people - disabled children -  lose their lives even today because of the false belief that we do not have feelings, and therefore, are not human.

We absolutely have feelings.  We have all feelings.  Whether or not we are able to express them in a way that makes sense to you is another matter, but we all have them.  Feelings exist in us.

Friends with disabilities, what are some harmful things that have been believed about you?

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Friday, February 12, 2016

Growing Up with a Disability: The College and Adult Years

It's time for the final blog post in the Growing Up with a Disability series: The College and Adult Years.  It seems there is a huge void beyond about elementary school as far as resources concerning kids with disabilities.  The fact is, we grow up.  If your child is eighteen or older, this post is for you:

For those of you who don't know, Ellen will be interviewing me about this series on Monday, February 15th.  If you have any questions about what you have read in the Growing Up with a Disability series, feel free to let us know.  You can contact me below:



Thursday, February 11, 2016

Growing Up with a Disability: The High School Years

Hard to believe that my guest post series is almost done!  High school and college and then a Skype interview (if you have any questions about the posts from this week, let me know and I'll address them in the interview.)  In the meantime, check out all the things that made a difference to me in high school:

Wednesday, February 10, 2016

Growing Up with a Disability: The Middle School Years


Up late tonight so you get to see the next post in the series almost as soon as it's up: lucky you!  Be sure to read for some important information on helping a middle schooler you may know with a disability to navigate the difficult aspects of growing up with a disability:

Tuesday, February 9, 2016

Growing Up with a Disability: The Elementary Years

Hey friends, having some difficulty with my computer today, so no picture with this post, but please feel free to check out my second guest post on Ellen Stumbo's site.  Today, I focused on the elementary school years, and the biggest issue that came up for me then.  See what it is by clicking below:

Monday, February 8, 2016

Growing Up with a Disability: The Early Years



Friends, check out this new and improved version of my previously published guest post on Ellen Stumbo's site.  You may remember a version of it from last October.  However, this one contains twice the information.  Be sure to leave comments and/or questions, because Ellen's going to be interviewing me on Skype after the whole Growing Up with a Disability series (through college; 5 posts) is published, and I'll be answering your questions about the series.  I look forward to hearing from you!

Monday, February 1, 2016

Let's Talk About Typical Siblings

A few days ago, I read To the Typical Siblings, written by fellow blogger and friend, Ellen Stumbo.  Reading it made me wonder about how my own typical siblings felt, growing up with a sister who was more obviously physically disabled.  (My twin sister was also born with Cerebral Palsy, but because hers was less involved, she was raised by our family as if she were typical, even though she had surgeries and went to physical therapy afterward like me.)  As we are all adults now, I thought it was important to hear everyone's thoughts about what it was like growing up with a disabled sibling (or siblings).

Based on what I have read, I was expecting my siblings to have a certain response.  Many of the accounts of typical children involve negative feelings such as anger, resentment or sadness toward the disabled sibling.  I don't want to minimize that experience.  It is valid.  I will say, though, I was surprised to hear such calm, loving and reasonable responses from my sister and brothers, because my research set me up to expect something altogether different.

Did you ever feel overlooked by our parents?

Tara, 34:  I was never overlooked!  I was always called on as the oldest to help or baby-sit or achieve to a respectable level.

Tye, 30:  I would definitely say that I never ever felt overlooked by Mom or Dad. At least that's how I see it now.  If I thought I was at one point or another, I was just over dramatic or acting crazy, because I was never ever overlooked. I got a lot of positive attention playing sports and other things. And I got a lot of negative attention when I got caught acting like a jerk, but either way I wasn't overlooked.

Trent, 29:  I never felt overlooked.

Tanner, 19:  My answers will be different as I am the baby by quite a few years.  I feel like my childhood was pretty normal for someone as young as myself with siblings as old as you guys.  I was and still am spoiled by Mom and Dad and never really felt overlooked.

Did you feel like you had to sacrifice certain things because of me?

Tara, 34:  To be perfectly honest, I think I used the idea of you needing me as an excuse not to do things more often than you actually hindered me from doing anything.  I was shy and liked the idea of social gatherings much more than actually participating in them.  So, this excuse was a comfort and a convenience as much as I may have tried to convince myself otherwise.

I sometimes resented the adults in the family who were constantly reminding me to help you.  As if it was the sole purpose of my existence.  As if I wouldn't have done it otherwise.  As if you couldn't ask me yourself if you needed help.

It's hard to determine where any potential resentments may originate - whether they stem from being the oldest, the "more able-bodied" sibling or identity issues that come from being a twin. 

Tye, 30:   I don't think that any of us ever had to sacrifice anything. I feel that when you grow up with a person or people who have a disability, whatever it may be, that is your normal. Anything you can or can't do isn't a sacrifice, it is all just your normal. 

I can completely understand how anyone disabled may have those thoughts for many reasons, but that would be another conversation. 

I remember getting to sit in the front of rides at Valley Fair and stuff like that. I also remember feeling bad that you couldn't do certain things, but as a selfish and self-centered child, I'm pretty sure I never had to sacrifice anything. 

Trent, 29:  I don't think there was anything I couldn't do because of you.  Nothing comes to mind, anyway.

Tanner, 19:   I do not ever recall feeling limited because of you.  We didn't do as much as a family by the time I was into my childhood.  I feel like you guys were all pretty much a well-oiled machine with traveling and whatever else we did together.

Do you feel like you gained anything specific having a disabled sibling?

Tara, 34:  I gained awareness about accessibility issues, as well as a basic understanding that pitying someone because they are disabled is unwarranted.  I learned to always presume competence and ability to communicate regardless of disability.

Tye, 30:   I definitely think that there is a lot gained from having a sibling with a disability. You learn from a very young age that they are normal human beings that have feelings and can do everything that anyone else can do.  And they actually have to be smarter and more adaptable to do certain things that people without a disability never think twice about. All that being said, I think generally it makes people a lot more open-minded and less judgmental. 

I also think that I learned empathy from it. As a kid, my thought about my sisters were that they are just as strong as everyone else, and they are a lot smarter than anyone else - they just have some trouble walking. That's how I would explain it to people when I was younger. 

I also think that I gained different insights and had different life experiences than other people, and I would definitely say those are positives.

Trent, 29:  I think just things like patience and respect when I was a child.

Tanner, 19:  I feel like I was brought up with a lot more empathy and understanding of different people's situations because of you (not just people with physical handicaps either).  It also left me with a much more positive outlook on life, seeing as how much you have achieved and influenced others seemingly without being hindered by your physical limitations.

You and Tara probably disciplined me more than anyone else, and kept me from being a bigger [butt] head than I could have been.  You made my childhood awesome with all of the reading and movie watching and everything else we did.  I am extremely grateful for that, as Mom and Dad lived pretty busy lives and couldn't have done that for me themselves.

What do you think about parents feeling sorry for typical siblings - pitying the normal childhood they didn't have?  

Tara, 34:  Did I ever fantasize about having less responsibility - sure.  That's not unusual.

 My experience is not exceptional, it is normal.  It's being part of a family.  So, to be severely praised or conversely pitied for living my life with my siblings?  It's kind of weird, to be honest.

The emphasis within our family was on success and pulling one's own weight regardless of ability.  I never felt like Mom and Dad expected less of you.  So, as such, I also never felt like I had to succeed based on my ability level.  Also, placing undue pressure on someone to succeed solely because their sibling is disabled feels unfair and potentially harmful.

Tye, 30:   I'm not sure that I'm understanding correctly, but I don't at all feel like it was something that happened in our family. 

I'm sure that it is something that is fairly common, and it's a horrible thing. I'm also sure it would be very easy for someone to feel that way, too.

Trent, 29:  I think that you only get this one life, and one family, and to look back and regret that your children grew up in a unique situation seems silly. I would tell them to remember: that is quite literally what family is for.

Tanner, 19:  I think it's normal and understandable for a parent to feel pity towards the siblings, though I do not feel it is necessary.  

Going off of what Tara said: Siblings are there to be siblings.  They are there to understand, help and grow with one another in a whole spectrum of different ways.  I think most siblings (at least ideally) are understanding of each other and our various strengths and weaknesses.  That's just part of life.  

I'm also a firm believer that struggle is a natural and necessary part of life.

What is one thing our parents did that other parents could do so that their typical kids grow up feeling valued and not less important than a disabled sibling?

Tara, 34:  Helping out at an age-appropriate level is a great skill to learn early.  ("Bring Daddy that toy, please."  "Can you hold your sister's hand?")  It promotes a sense of purpose and emphasizes the importance of teamwork within the family.

Tye, 30:  I think positive reinforcement is one of the most important things a parent can do for their kids, so they grow up confident from a young age.  So they are not ever afraid to try new things, not afraid to fail.  So they are confident with humility.

Trent, 29:   Although very busy, I think Mom and Dad did a good job [nurturing] whatever it was we enjoyed doing. Creativity, sports - whatever it was at the time.

Tanner, 19:  Tara mentioned everyone pulling their own weight earlier, I think that was a really good example of that.  I feel it's important to remain somewhat similar with expectations between children.

CLOSING THOUGHTS:

Having researched the perspective of typical siblings a bit prior to conducting this interview, I find my siblings' responses to be a rare light in an oftentimes dark conversation.  To them, having a disabled sibling is normal, and the overall impact of having me in their lives has been positive.  It's my sincere wish that every disabled child grows up with siblings as amazing as mine.


{Photo is of my siblings and me.  November, 1996.  Photo credit to my dad.}


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