Friday, October 20, 2017

Them, Too? What About Those with Disabilities?

My autistic brother in law, Bil, has never had a girlfriend.

He is definitely interested in women, especially blondes.  But I don't even know if he has ever tried to ask a woman out on a date.

On the other hand, would I ever have wondered if Bil was ever a victim of unwanted advances, on the other hand?

The recent #MeToo movement has made me wonder how many people outside of the disability community are aware of how often this vulnerable part of our population are subjected to this type of abuse. This is not to minimize what we of the non-disabled community have gone through (I am a woman in my 60's, so yes, I can come out and say MeToo, but that isn't the purpose of this blog post), but rather to bring up the following.

Here are some troubling statistics, courtesy of the national ARC: I quote, and hope the ARC is OK with that.  This word needs to go out.

"How often do adults and children experience sexual violence?
Studies consistently demonstrate that people with intellectual disability are sexually victimized more often than others who do not have a disability (Furey, 1994). Other studies suggest that 49 percent of people with intellectual disability will experience 10 or more sexually abusive incidents (Sobsey & Doe, 1991).
Any type of disability appears to contribute to higher risk of victimization but intellectual disability, communication disorders, and behavioral disorders appear to contribute to very high levels of risk, and having multiple disabilities (e.g., intellectual disability and behavior disorders) result in even higher risk levels (Sullivan & Knutson, 2000)....

Women are sexually assaulted more often when compared to men whether they have a disability or not, so men with disabilities are often overlooked. (emphasis is mine) Researchers have found that men with disabilities are twice as likely to become a victim of sexual violence compared to men without disabilities (The Roeher Institute, 1995). "

And this....
" How can sexual violence of people with intellectual disability be prevented?
The first step is recognizing the magnitude of the problem and facing the reality that people with intellectual disability are more likely to be assaulted sexually than those without disabilities. Also, societal attitudes must change to view victims with disabilities as having equal value as victims without disabilities, and giving them equal advocacy. Every sexual assault, regardless of who the victim is, must be taken seriously."

Yes, Bil is at risk, as is everyone else with an intellectual or communication disability, and Bil has both.

I wonder....does Bil have a #MeToo story to tell?

Friday, October 13, 2017

Friday Reflections for October 13 - Do You Dare?

Many community groups and nonprofits are waiting with bated breath for the outcome of the Scarecrow Decorating contest in our community.  Who will win?

I am a member of two nonprofits - here are their entries.

ACHIEVE formerly was called ARC, which, at one time, was called the Association of Retarded Children.  The name change shows just how far we have come. No one now, in our country, would ever name an organization using the "R" word.

STIC is the "Southern Tier Independence Center", a non profit for and by those who strive for independence.  Their major fundraiser is a haunted house escape room- do you dare enter the Escape Room?

I've never done escape rooms - have you?

Friday the 13th - a perfect day for a post related to Halloween.

Joining Sanch Vee and other bloggers for #FridayReflections.  Today's prompt:  bated breath.

Friday, October 6, 2017

Nostalgic - #FridayReflections

It was last September. My husband and I were sitting in his cousin's living room.

On his large screen TV, the cousin was playing DVDs of home movies his late father had taken.

On the screen, two teens and a pre-teen mock-fought in a childhood back yard.

Or, should I say, two teens mock fight, because the third boy (who may have been 10 or 11 at the time, come to think of it) wasn't really interacting with his brothers.

The movie was taken at a family picnic.  Almost all the adults in the movie are now deceased.

I had never seen the home movie before, and it took me a bit to recognize the three boys.  But my husband recognized them immediately.

The teens are a lot older now - two of them in their 60's, and one in his late 50's. They were my husband and his next younger brother. The youngest one, the one who really wasn't interacting, was Bil, my husband's autistic brother.

I enjoyed this tiny glimpse into their life, before I even knew them.  It was a time when things just seemed simpler.  We had no idea of what would come in the years since.

Nostalgia is longing for a simpler time. 

My husband's teen years, in many ways, were simple.  His parents were still there to make decisions, and the future was far away.

Sometimes, you just want to go back....

Join Sanch Vee and other bloggers for #FridayReflections

Friday, September 29, 2017

Fearing for the Future #FridayReflections

Today, on #FridayReflections, we have 10 minutes of free writing.

No editing.

Walking on the high wire.

Let me tell you about something that happened the other day.  I was in the building where I work, and someone flagged me down.

"I saw you at the XYZ meeting.  Are you doing the Front Door?"

I was taken aback a minute.  But then I remembered what she was asking, after she told me "I was at that meeting, too.  I was sitting in the back, and you were sitting (where I was sitting)."  Funny how that jogged my memory.  And then, I certainly did remember.

What that meeting was about was finding out something about a self determination program.  It may well be that eventually, all people with disabilities in New York State will be funneled through that program.  Instead of having others set up programs, the disabled person is basically given a budget and told to hire their own people.  You need to keep track of hours.  In fact, if you find out that the provider of services is not doing their job properly, and you don't immediately speak out, you (the disabled person, or the advocate) may be committing Medicaid fraud.

Anyway.  She asked if I had signed "Bil", my developmentally disabled brother in law, up for that program.  I said no. 

This is what she told me.  She has two children.  One is not disabled.  The other one has serious medical issues.  And she's been having some trouble getting services.  But she hasn't signed up yet, either.

Sometimes I think the pendulum has swung too far.  At one time, disabled people were treated as second or third class citizens, or even as little children, even if their disability didn't affect their mental functioning.  The "People First" movement has been a blessing to many of those people, who can now manage their affairs, with supports.

But then there are the other people.  The medically fragile.  The intellectually challenged.  Under many of those programs, they still have to make the same decisions as those without cognitive disabilities.  Or, they can be like Bil, in his late 50's, and never having had to take charge of his life before.

You just can't be thrown, if I can use an expression, into the deep end of the pool, with out having had swimming lessons. Good luck with that.

I fear for Bil in the coming years.

What if, one day, he ends up with no family to advocate for him?  The two brothers in his life are both older than him.

One day, we may look back on these days. 

And with that, I finally want to say that I still am not sure what direction I want to take this blog in.  I may blog for the rest of October, although I am participating in several challenges with my main blog.

If I stop publishing, I will let you, my readers, know.

(end of 10 minute free write).

Join Sanch Vee and other bloggers at #FridayReflections.

Friday, September 22, 2017

The Blue Bicycle and the Boy #FridayReflections

Photo Credit:  Sanch Writes
The boy looked out from the motel window.  His family was at the beach, enjoying a rare vacation.

In the distance was a girl's blue bicycle. A beautiful aqua blue, it had a basket, perfect, perhaps to carry a picnic lunch.  It had been left there near the water.  Perhaps the girl who owned it was swimming with the rest of his family.  Or eating.  Or doing something else fun.

His family was on vacation, true, but while his sisters had gone with their mother to the beach, the boy had to stay behind with his Dad.  His Dad tried to distract him, but it didn't work.

"Why do I have to stay behind, Dad?" he thought.  "Why will I never even be able to ride a bicycle? Or swim?"

With an effort, he got out of bed to get a closer look.  The effort in itself winded him.  He paused to catch his breath, while his father looked at him, making sure he didn't need help. 

He knew better than to ask the question.

It was his heart.  He would be confined, for the rest of his life, to bed.  But every moment, with every beat of his damaged heart, he would ask.....why can't I be like everyone else?

* * * *
Writing for #FridayReflections.  Today's prompt - the above picture.
This is not total fiction, but rather, is based on the story of one of Bil's next door neighbors growing up.   The neighbor child, "A", born with a congenital heart defect, died when he was in his early teens.  He died before I met Bil's older brother, my husband.

Bil is in his late 50's and developmentally disabled.  He also has an almost "photographic" memory. 

Perhaps he sometimes thinks of "A", the boy who had to stay in bed for part of his life, and died so many years ago.  

And maybe he thinks "we all deserve the best lives we can have, despite what others call our disabilities".

Friday, September 15, 2017

The Impossible as Possible #FridayReflections

"We are all faced with a series of great opportunities brilliantly disguised as impossible situations" - Charles Swindoll.

So true.

I've been blogging about my brother in law, "Bil", in his late 50's, and autistic.  We are trying to get him "forever" housing as the day his mother can no longer care for him approaches.  Both we and my other brother in law/wife are older than him.  We won't be around forever, either.

We thought an apartment opportunity had opened.

But several days later, unexpectedly, we were told the apartment was no longer available.

Frustration.  Disappointment.  Sometimes, it really does seem impossible.  People with disabilities in the United States have it better than in many other countries, but still.

Bil can no longer find work (I should blog about why).  Bil has a very limited government pension.  His medical coverage is in danger, thanks to the feeble efforts of health care reform in this country.  Why should that even be?

I need to be a better advocate.  But I work full time, and I also have my elderly mother in law to think about.  It's nice to know there are great opportunities out there somewhere, if that quote is true.

So now, the future of this blog is also on my mind.  I have few readers.  I get that.  The subject matter is somewhat specialized.  I also keep myself anonymous for personal reasons (and because I talk sometimes about family), which prevents me from promoting the posts on social media.

I wanted to write a book one day.

Maybe it will all happen.  But right now, it just all seems impossible.  Should I quit?

The prompt I am writing for says "no".

There's always tomorrow, when the impossible may become possible, and another opportunity may open up.

Written for #FridayReflections, hosted by Sanch Vee.

Friday, September 8, 2017

Alone Together #FridayReflections

How can someone be alone, but together?

You can listen to this Fall Out Boy song, "Alone Together".  "We can stay young forever/we'll stay young young young...." the lyrics read.

The problem is, none of us can stay young forever.

One day, the ultimate loneliness will come, especially if a family comes apart.

For my mother in law, it may be today, when she finds out that her autistic son is being offered an apartment.  After years of waiting, "Bil"'s name has reached the top of the waiting list.  They have never lived apart.  My mother in law has made it clear, she doesn't want him to leave.

She never made any arrangements for Bil's future.  She never once sat down with us to share what she hoped we would do for Bil.  I admit to having a lot of anger about that, and anger that her inactions have led to this moment.

If Bil doesn't take the apartment, his housing future is uncertain.  None of us can guarantee what will happen the day his mother can no longer take care of him.

My husband and his younger brother are both older than "Bil".  He needs care for the day we are gone. Chances are, he will outlive all of us.  In fact, he is in better health than any of his older siblings. 

We want very much for Bil to seize this opportunity for independence.  At the age of nearly 60, Bil can start to truly grow up and take on adult responsibilities he has slowly been training for through his day programs.  Everyone feels he has a potential for achieving a lot.  He has been through a lot these last two years since moving up to be closer to us.  So have we.

So, although we are one family, we are split apart.  Mother in law on one side, the two brothers on the other side.

Bil in the middle.

Alone together.

What future will Bil choose?

We will know after today.

Join Sanch Vee and other bloggers at #FridayReflections.