Summer Reading: From the Light to the Trancendent

For me, the summer leaves me feeling scatterbrained. Too much noise, too much going on. Chicken Soup for the Soul books provide a quick break, a breather, and a chance to focus.

The best part of Chicken Soup's books is the diversity of topics. You can find any topic that interests you, and then get dozens and dozens of different author's stories. And because the stories are short, it's okay if you only have five minutes to spare.

Above I've placed six of Chicken Soup for the Soul's newest books, books I thoroughly enjoyed and highly recommend.

A Review of Eric Fischer's Collected Works of Poetry

"a greatness beyond all possibility of calculation, measurement or imitation"

Purchases of this book go to support Eric's care of his son Segev.

Preferred purchase link is https://www.createspace.com/4652145

but the book is available on Amazon as well.

I've been following Eric Fischer's blog about his beautiful and profoundly disabled son Segev for several years. Segev has a condition known as Ohtahara Syndrome, which is a progressive disease involving seizures that often don't respond very well to medication. Eric has spent the last sixteen years taking care of his son, who requires 24 hour support.

Over the last nineteen years, Eric has amassed a collection of poetry that is, with no exaggeration, sublime. I have his first volume, Little Job's Book of Broken Poems, on my kindle, and I've found it meaningful and often come back to it when I need to know I am not alone, that others, too, see the wonder and pain of this world entwined. I am always led to think and feel when I read Eric's poetry and it never fails to create a feeling of bittersweetness that I carry with me long after I've set aside the poems.

Eric's dedication to Segev and commitment to honoring his son and other children who live with profound, severe disability is punctuated with loss and struggle and exhaustion. In one poem, "The Tender Heart," Eric writes that 

A tender heart may lose its way,

With resolve returns to win the day.

Falling down, feeling broken, these things are to be expected, are unavoidable consequences when one battles each day for another day for one's beloved.

It is not just the tender heart, but also the foolish heart that plays a role in being able to keep going, long day after longer night, weary.

Despite adversity into the fray:

A foolish heart will see the light of day.

Eric knows all too well what he's fighting for and what the cost is, and his dedication to his son and to making the world recognize the value that is inherent in all people, regardless of functionality is heroic, although he would likely reject that characterization. He is, in his opinion, doing what he must.

In a poem about Segev, he writes:

The rope that binds his body cannot bind his soul:

The secret of the heavens that define this role,

Never has a dream garnered such a toll.

He continues later in the same poem, "Darkness,"

The struggle to survive

Universal and constant

Where no one is asked 

Whether they can bare it nor

Want it.

 Life and death and the things that really matter: Eric's life is wittled down to the essential, as are the lives of other parents loving and fighting for their children and their children's lives. Eric writes in a poem titled "Ohtahara,"

Death is in the fight.
...
Brought to our knees

With aches of love for our children so affected,

Death is a rampant disease.

Eric writes not just about his and Segev's experiences, but also devotes several poems to other children and their families and tackles the heartrending task of the loss of other children to the diseases they and their parents valiantly wrestled with. Of Jack, in "Brave," Eric writes,

Brave brave, little thing,

Across the heavens you will sing.

 Eric's poetry calls us to feel, to think, to be, to embrace the moment. I can't help but be reminded of Nancy Mairs, a poet and author who has MS, and her interview in PBS's documentary,  & Thou Shalt Honor,   how she feels called to life:

And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.

 Eric's message, in the end, is similar--he calls his son to life, he asserts the inherent value in all people, regardless of what they can "contribute." He rejects any and all idea of allowing his son to go gently into that good night.

I am honored to be Eric's friend, to be allowed to bear witness to Segev's beautiful life and Eric's passion for giving Segev the best life he can for as long as he can. I encourage you, if you have not had the honor of meeting Eric and Segev, to visit Eric's blog and Segev's facebook page, and to participate in Segev's support by purchasing I am a broken man/You can't break me.

--K Wombles

No Consensus to be had: Recognizing Compassion is not Condoning

In September last year, we were horrified when a member of our community tried to kill her daughter and herself. Friendships were ended over the divide in how to handle the situation. I lost a person I considered a close friend over what I still believe was a miscommunication rather than a real difference of opinion.

This last week a Canadian single mother of a severely autistic teenage son killed her son and herself and once again the community erupted and people find themselves on opposing sides.

Part of this is truly a difference of opinion. There are those of us who are horrified at how the victim in this kind of crime is portrayed as the perpetrator of the murder rather than the murder victim.  That, should, I think, be the way we react instinctively: the victim is the autistic person who has been murdered. No matter what the reasoning behind the parent's actions, the primary victim is the autistic individual who has been murdered.

The lead in the news coverage is that a disabled individual has been murdered by his/her parent, not how hard the parent had it.

After that acknowledgement, in a separate conversation it is reasonable to wonder what drove the parent to the point of murder and whether there are actions the community could take to safeguard vulnerable individuals. What is an appropriate level of governmental intrusion into the lives of families? Would that have made a difference?

Why did this mother do this? Why didn't the medical community help? Why didn't the Canadian equivalent of CPS assist?

The list of why questions are endless, and the reality is there aren't answers for all of them.

What is the solution for families unable to provide safe living spaces for their disabled children? Turning them over to the state? Relinquishing their parental rights? Should they have to do that to get their child help?

Why aren't there enough resources for families and adults who are disabled?

The one clear answer is that there should never ever be a time where we condone the murder of a disabled child by a caregiver. That action is never understandable, always reprehensible.

Condoning an act of evil and having compassion for people breaking under what they find to be insurmountable situations are not the same thing, though.

We can feel compassion that this mother was turned away time after time. We can feel for her that the state, the community, and her family failed to assist her or to see the level of despair she was operating under. We should, I hope, feel even greater compassion for her son, the child she made a choice to murder before ending her own life.

He was failed all the way around, by every one. He was the one deemed not worth helping.

Compassion for autistic individuals in maladaptive or dangerous environments that don't meet their needs and routinely fail them--that ought to be the number one concern--we must care before we can act. We must deem autistic children and adults to be of equal value to non-disabled individuals. And then we must advocate for adequate resources and assistance for these individuals so that they are safe and in an environment that they can thrive. That means assisting families.

Compassion for families who don't know where to turn and face closed doors every time they reach out should be the secondary concern. These two concerns work in tandem and we need to recognize that.

The solutions for families struggling to access resources to assist their disabled family member is going to be family-specific. It will look different for each individual. We cannot afford cookie-cutter solutions, and the ongoing debates in the online community tend to detract from any real action occurring.

How do we move from advocating to action?

Where do we start?

Calling on the media to remember who the true victim is in a murder/suicide is an action that must occur.

Calling on the state and local organizations and the medical community to make sure adequate assistance and resources are available is necessary.

Helping families in need by being there to listen, to provide respite care, to put your money where your mouth is are all needed actions.

We must build local cooperatives in our local communities, create strong ties between families and communities so that when a family is in crisis, it isn't happening out of sight.

Investment in each other and commitment to being there for each other goes a long way, as those of us who have had the benefit of having a circle of friends who have our backs know all too well.

As we work to create real change in the real world, we can also resolve to treat each other with compassion, to listen to each other and to be willing to ask for clarification before we decide we've hit that wall that terminates what had been a supportive relationship.

I don't know about you, but I certainly don't have so many friends that I want to lose a source of support and solidarity over a misunderstanding.  Let us have compassion for each other and understanding that these tragedies are horrible for the families they happen to, but also to us, as well.

--Kim Wombles
*Please know that this post reflects my opinion alone. If you would like to submit a post on this topic, please email me.

Inclusion means everyone-or when special isn't special...an open letter to Special Olympics Maine

Cross posted from autismherd. Please share! 

contact info is Phil Geelhoed   PhilG@somaine.org
  To whom it may concern-or Hey Person who picked the venue for today's state swim meet!

 

I sat at the special Olympics today. It should have been wonderful.  It is not often that people with disabilities (either physical or developmental) are able to get together without judgement to participate in sporting events.

But it wasn't wonderful. I sat there and quietly seethed because I knew of at least one individual who worked equally as hard-but was unable to participate. This was not through any fault of their own-it was simply because the chosen venue had no hoist to help them into the pool. Imagine that-a "Special" Olympian excluded because of the very thing that made them "Special". Equally as unthinkable-a Special Olympics venue that was not fullyhandicap accessible! It boggles the mind.

Yes, there were people who were eager to help-"We'll hoist them in and out of the the pool ourselves-whatever it takes!" To add fuel to the fire-there were no accessible changing rooms for this person."Oh we'll let you use an open area and stand around them holding up towels." While I am sure that these were well intended suggestions, that there was no malice-I am equally sure there wasn't any real thought behind them either..This is a human being. Someone with thoughts, feelings, a personality. A person  deserving of dignity and respect. Someone who wanted their moment to shine-not for the spectacle of being hauled into a pool by strangers-or made to change behind a shield of towels-but because they were an athlete-a participant. Accepted and Included.

  Oh sure, I heard the excuses-when someone complained about this athlete being excluded, they were told- "You find a venue big enough to hold everybody!"  That doesn't  make sense. Really- what is more important?  A venue big enough to hold all the athletes or a venue that accommodates all the athletes? Had people known there was an accommodation issue(meaning  more than two days before the event) maybe they could have found a way to rent a hoist-or fund raised to buy one. Maybe a smaller more accessible venue (spread the event over two days) could have been used. Who knows what could have been done.  I do know however, what should have.

  I thought about this as I sat there today-watching all of the happy faces-seeing the pride in accomplishment, the joy in success. I sat and thought about the person who wasn't there-who didn't get their moment and wondered how left out they were feeling.  I looked around and saw all of the bright yellow Special Olympic tee-shirts - emblazoned with "Inclusion" "Friendship" "Unity" "Respect" -all such lovely sentiments. I tried to measure those sentiments against the person who wasn't included...and sadly realized that today- they were just words. .

  That athlete (and any others that may have missed out today) is owed a big apology. Accessibility, accommodation and inclusion-especially in the Special Olympics, should NEVER be an issue.Nor should they only be words on a tee shirt. This was unacceptable.

  As the mother of a "Special Olympian" and of other children with disabilities, I have heard far to many times about why my kids can not be included in some things. I can't tell you how much I loathe the sentiment "The needs of the many outweigh those of the few" I did not however expect that attitude to bleed in to the Special Olympics. I am appalled.

Sincerely,
Kathleen Leopold
Richmond, Maine
Kathomar@aol.com