19 Jun

You must be the change you want to see in the world

blog contributor Ashley Taylor at home with her sister

blog contributor Ashley Taylor at home with her sister

“You must be the change you want to see in the world.”- Mahatma Ghandi

For the past six years of my life I have lived by those words. There is nothing more beautiful than the truth, and the truth is, if we want to see change, then we must work to be the change we wish to see. This quote reaches me at a personal level, having become the base for what I consider my motivation for all that I do. For the past six years I have volunteered working with children with autism. My volunteering has ranged from summer camps to dances, and even annual walks, all for the cause of wanting to see change. I believe that the harder we work toward understanding and raising awareness, the better our chances of changing the way society as a whole views us. I refer to the autistic community as ‘us’ because I feel that that’s what we are. We are not just individuals, advocates, and families, but rather one family comprised of many, supporting one another and working toward a better future.

My younger brother and sister were diagnosed with autism at a young age, leaving my mother to wonder where to turn for support. When she found the Center they became an extended family, offering many new friendships, and opportunities for the support we had been looking for. It wasn’t long before I had become an advocate for the subject myself. Growing up, I had been taught not to judge other people; because of this I was able to see past their disabilities more easily, getting to know individuals for who they really were. What I saw was a collection of intelligent and creative people with a range of different outlooks on life. I have often heard that we must be the voice for those who have none and wish to be heard; I’d never heard a silence quite as loud, or quite as beautiful as the voice that they all shared. It was all I needed to motivate me to take action and begin the change I wanted to see.

I wanted the world around me to see what I saw. I wanted them to understand what I understood. For so long I had grown up around other kids that had mocked others with disabilities. It was my belief that they only did so because they didn’t understand them. I sought to enlighten them on the subject. For one, I grew tired of hearing people use the word “retarded” to describe any mentally disabled human being, or using it as a synonym for being stupid. The word is still being misused and given negative connotations, when in reality, I have yet to come into contact with anyone considered retarded, who has not in fact been smart. When I realized that the word was being used in a hurtful manner towards people I cared about, I set out to end the use of the word to describe anything but its initial intent.

I started with changing how I talked to my friends. I myself stopped using the word, and upon hearing it from one of my friends, would inform them about the meaning of the word. I told them that I did not appreciate the use of the word to describe stupidity, nor anything short of its true meaning. Eventually my friends began to implement other words in place of using retarded. Slowly I watched the change take place. Whenever I heard the word being used out of context I would kindly inform the speaker of my point of view. There were times that I was met with more mockery than success, but I realized that those moments were obstacles that I had to overcome. I was supportive of my school’s attempts at a “spread the word to end the word” campaign. I felt that it was a step in the right direction towards a positive change, but in order for it to take effect, we as students had to make an effort to work towards that change individually. Even now, every day I seek to change the way people see others with disabilities, and how they use certain, perhaps hurtful words to describe them.

As an individual, I sought to be the change I wanted to see; I seek to be the change I want to see. I wish to see an environment free from judgmental ignorance that may one day be more kind to people like my brother and sister, and the other families we have bonded with. In order to see that wish come true I have to do my part in making it a reality by working towards that goal. Sometimes we have to be the voice for those that cannot speak, and even then we may still have to fight to be heard. Though we may encounter many obstacles on our journey, they are not reason enough to give up altogether. I’ve heard the best things in life are worth fighting for, and for the sake of hearing the beautiful voice of a silenced community, I will fight to be heard. I will see a world where being disabled carries no negative labels, where no word should be used to harm those that can’t understand. Even if I only succeed in changing the minds of a few, I will have made a difference to many. I will be the change that I want to see in the world.

Author Ashley Taylor has been a part of our extended family at the Autism Resource Center of Central MA, a program of HMEA, for many years. She now attends college. For more information about autism or the Center, please visit http://www.autismresourcecentral.org

27 Feb

Where is the outrage?

This is one of those times when I’m going to make reference to my Facebook friends and risk annoying people, but they know me well enough to know that I am passionate and they love me anyway.

I posted this on my wall recently, with 2 words: SHARE THIS.  2 people did, out of over 500 (between 2 accounts).  Slightly disappointing, to say the least.

This is an excellent PSA, but you and I both know it won’t be shown during the Super Bowl (next year), the Grammys, Oscars, or during The Wizard of Oz.  It probably won’t get any airtime outside of 3am-6am on cable, in fact.  I haven’t seen it yet – have you?  Other than on YouTube, where you have to search for it if you know it’s there because somebody put it on their Facebook wall.

I want people to be as angry over this as I am.  Hollywood movies are getting away with using the R-word, so I guess that makes it ok?  You hear it dropped all the time in public, by people of all ages and socio-economic levels, and nobody even blinks.  I bet many of you cringed when you heard the opening lines of this PSA – those words have become painful to hear, offensive even in this context.  But not “retard.”

It seems we are early in the evolution of this word as an insult akin to the others.  From a sociological point of view, it’s interesting.  If you look up the history of the word, it’s derived from a Latin word used to describe someone who meets the clinical criteria for mental retardation, and was actually a later word (earliest usage is found in the late 1800′s) after its predecessors like idiot, moron and imbecile became derogatory.  It has only been considered deragatory since the 1960′s; seem recent, but that’s an entire generation that has continued to accept the word as a term used for anything that is unintelligent, less than worthy, inadequate – to say it nicely.  An entire generation, and it’s still going strong.

It parallels our society’s still-evolving acceptance of people with diverse intellectual abilities, in my opinion.  Although I dare say, when it comes to acceptance, we’re not quite evolving – we’re in the stone age.  We’re still trying to move people out of institutions and give them dignity of life.  The recognition that people with disabilities have the same rights to education as anyone else is a concept legalized only in the 1970′s.  The founders of HMEA were pioneers in fighting for the rights of people who were tossed away and left to lead subhuman lives in state homes for ‘imbeciles’ and ‘morons’ – just 50 years ago!  The people they helped are still alive!

I was talking to a fellow parent last summer and she described something someone said as being ‘retarded.’  I told her that’s not a word that should be used to describe anything, any more than I would point out a person and refer to them as “that nigger or that fag over there.”  Her mouth dropped open and she gasped.  ”It’s really as bad as THAT?!”  Yes, my friend, it is.  And we all have a responsibility to let others know that it’s in the same class as the other words we would never use.  I actually had someone un-friend me on Facebook and say that I’m over-dramatic and he doesn’t want to deal with me because I’m joining the effort to end the R-word.  Two examples of how much more work needs to be done.

I’m angry, yes, but I’m keeping the faith that with baby steps like this PSA and the Campaign to End the R-Word.  I’m inspired by people like this Dad who shared the lines below with Children’s Hospital of Boston.  I guess the only thing I can do is continue to reject the word and ask others to do the same.  Please share this with someone today, and be a part of something really, really big!
Being Retarded – by a father at the Down Syndrome Program at Children’s Hospital of Boston.

All around me, people use the word retarded without a second thought. Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad! But really! I was being so retarded!”

Sometimes, I let it slide. I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.

But what does it mean to be retarded? Well, I know what it doesn’t mean.

It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.

It doesn’t mean not being able to find your car keys.

It doesn’t mean saying the wrong thing to a person.

It doesn’t mean forgetting your best friend’s birthday.

It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.

It’s not something to describe your computer, car or phone.

According to Merriam-Webster Dictionary the word “retarded” means -

: slow or limited in intellectual or emotional development or academic progress

For me, it’s not just any old word – it’s my daughter. My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.

In our household, being retarded means something different.

It means not being able to fully care for yourself.

It means not understanding what the doctor is going to do to you.

It means not being able to explain what hurts when something hurts.

It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.

But ever the optimist, I also know that retarded means…

…never realizing the negativity behind the word retarded.

…never knowing the insensitivity surrounded the word’s usage.

…never realizing the ignorance of people.

…never knowing how other people view you.

Being retarded also means…

…loving unconditionally.

…finding joy in the smallest of things.

…being self-confident.

…not realizing that there are limitations.


16 Jan

How childhood discrimination prepared me for my adult experiences (not what you think)

This was my Facebook status this morning:

On Martin Luther King Day, I’d like to applaud and reiterate my pride and awe for my parents. In the early 1970′s, my Mom and Dad (who only had me at the time, I was 5) adopted a child of mixed race, African American and caucasian. They went on to have 2 more children soon after the adoption of my sister. My parents were pioneers in mixed race adoptions, and I can assure you – they did not have it easy. They held their heads up high as they were the targets of bigotry, hatred, scorn, from every direction. So was I, and my sisters. They loved each of us equally, and still do. When you live with or in a situation, it becomes normal – it becomes a part of you. Myself and my family are both more tolerant and more aware of racial discrimination, and I also thank my parents for that. I went on to marry a man also of a different race, and we have 2 children of mixed race. And so now, while my family could make our own Benetton commercial, we prefer to simply call ourselves a FAMILY.

Even as we speak, lots of responses and “likes” are coming in under that post, and I’m appreciative that it is catching the attention of my friends.  As I think about my childhood and these experiences, I have to admit that the post had dredged up some dark and painful memories – mixed in with a renewed sense of pride and gratitude for the experiences and how they have shaped me.  And now, as an adult, I realize that those experiences also prepared me for my own journey as the parent of a child with autism.  My son will be 20 this year, so he was of that very early wave (although many came long before me) of the autism epidemic.  I guess that makes me a pioneer in some respects, of the generation who has kept their children home and not hidden from society (again, with a nod to those before me who did the same).  I have very distinct memories of the early 90′s when I was yelled at, asked to leave, reprimanded for poor parenting; when my son was kicked out of daycare, stared at by horrified bystanders – and while this goes on today still, the difference is, most people had never heard of autism, so explaining was futile.

My disabled peers were down in the basement at my school in the 70′s and 80′s.   But we were the first to share our classrooms with children of all races from the first day of Kindergarten without having lived through desegregation.   Children now have their disabled peers sitting next to them in the classroom and have no understanding of the concept of them not being allowed in their classroom at all.  They will not care that their next door neighbor has Asperger’s syndrome or Down Syndrome, or that there is a group home nearby.    The founders of HMEA were people who, like my parents, were also pioneers.   50 years ago they decided to begin the battle for dignity and an end to the cruelty of people in institutions.  My generation is taking that to the next level and carrying on the fight for educational and community equality and acceptance.  These are examples of what I’m talking about in my Facebook post – when you live in a situation, it becomes normal, and becomes a part of you.  I think that ‘you’ can be applied to the collective ‘us.’

As I read through this blog post I have come to yet another realization – that every generation has something to pioneer, a different societal wrong to fight against , to change our collective minds and make things better for others.  I wouldn’t change my life experiences because they have given me lessons, strength, faith and hope.  Wow, what an amazing time to be alive!

3 Jan

The Return To ROUTINE – which side are you on?

Perusing my friends’ posts on Facebook and Twitter, I’m struck by the wide variety of emotions evoked by being done with the holidays.  They range from “the kids are back to school!  Hooray!” to “not motivated to take down the decorations, because it means the return of routine.”  Some even go so far as “I didn’t think I’d make it through, I need to sleep for a few days.”  Even though this sounds comical, when it comes from a parent or caregiver of a child with special needs like autism or a mental health disorder, they are probably not joking.

My own son with autism is now 19, and is residentially placed year-round at a school that can handle his behavioral and intellectual challenges.  He comes home for weekends and the holidays.  It’s been a few years now, but the memories of school vacations still bring me chills.  The utter and complete fear that can be evoked by the idea that for up to 2 weeks, I would have to manage my son’s needs devoid of any routine, assistance, ability to access help, and in the midst of everything around me thrown off by the holidays and all that they bring, was paralyzing.  Most of the time the very few sources of help I had were unavailable.  My husband couldn’t take the entire time off from work.  It took weeks of planning, because I had to have a plan for every moment that he was unstructured.  Unstructured equals disaster much of the time for our kids.  One of the only things I could count on was friends who could take my young daughter for playdates, which at least would leave me with just one child to manage, not both.

Oh yeah, and it was Christmas.  There’s that.

So getting back to my Facebook and Twitter friends…like I said, everyone’s a bit different.  I love Christmas and New Year’s Eve.  We had our son home for 2 days, which right now is the best he can manage.  I had my usual rollercoaster ride – Christmas Eve I cried for my son, his suffering and the sadness of it.  That’s the one day a year I allow myself to do that.  Christmas day I was overjoyed as my daughter leaped and screamed with each gift she opened.  I hosted my parents and other family members with joy, and my son was there and behaved beautifully – a true blessing for us.  I played a little hooky from work a couple of days last week and focused entirely on my daughter and husband.

And now it’s back to routine.  I am relieved, frankly.  I don’t consider myself a person who relies on routine, but when it’s gone entirely for more than a few days, I do miss it.  I was up at 6:00 this morning, making breakfast and lunch to pack.  It felt really, really good.  How about you?

PS – that bit about playing hooky from work…don’t tell my boss here at HMEA.  HAPPY NEW YEAR!

photo courtesy of http://www.curbly.com/users/chrisjob/posts/7803-ten-alternative-uses-for-your-christmas-tree

26 Dec

Yes, the spirit is alive; funny how crisis can bring it out…what about the rest of the time?

If you’ve been following the news and have heard about the layaway angels this year, you’ve probably been touched by the wonderful things these strangers have done, by paying off the layaway balances of random people at random stores across the country.  If you’ve been following the HMEA Facebook fan page, you probably saw the recent post about the stranger in the parking lot who handed a teacher $70 to buy lunch for the special needs students at our school in Hudson.  Did you hear the story about the person who put $10,000 into a Salvation Army bucket a couple days ago?

Seems that random acts of kindness are pervasive these days – how refreshing!  I can’t believe how many days in a row I’ve turned on the news and heard stories of generosity and giving.  It’s too bad these kinds of stories seem to come only, or mostly, during the holiday season.  And, seemingly – if my 40-some years serve me correctly – they also seem to come mostly during times of hardship and crisis.  Right now is a case in point; we are facing some of the most difficult financial and economic struggles this country has had in decades.  So now, generosity abounds.  Coincidence?  Maybe it’s just that the media is covering these stories more?  Not sure.  Would love your perspective.

I wonder how many people conduct random acts of kindness throughout the rest of the year.  I want to believe the spirit stays alive January-November.  As a parent of a child with special needs, and a person embedded in the disability community, I can say that I witness these kinds of acts a LOT.  I include every level of kindness, from a smile of understanding by a person in line while I struggle with my son, to the volunteer who shows up at the Autism Resource Center unannounced, wanting and willing to do whatever is needed, to the behaviorist who stays an extra half hour to coach a parent through a meltdown of epic proportions, to the woman who called me in July and said she saw me at a presentation and wanted to reach out to thank me for making her aware of how to help someone in need with a disability.

So I’m the lucky one who gets to see these things, because I’m involved with the disability community – I know how great these things make me feel.  What about the person whose life is not impacted by a disability or year-round crisis?  There’s no question that the man or woman who loses their job suddenly gains a deeper understanding of others in their situation.  Often that prompts them to do something charitable, that they may not have done before.  We know that if a young person dies unexpectedly, or a terrible crime is committed, the neighborhood and loved ones rally to create an event that helps the family or that supports people in similar situations, like victim support agencies or the like.

These examples, however, are not random acts of kindness.  They are reactive acts.  Random falls into the category 0f proactive; done before they’re needed or expected.

I know that New Years Resolutions are passe these days; I still have yet to maintain one myself.  But I think I will put ‘RAK’ on my calendar every month; maybe pick out a few days a month.  Reminders to myself to carry on that wonderful, amazing, inspiring practice.  Yes, it starts here during the holiday season.  Let’s keep it going; will you join me?

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