Sunday, February 16, 2014

On a disturbingly regular basis...

You know that scene in the movie Love Actually?

The one where Emma Thompson goes into the bedroom she shares with her husband, after having found proof that he’s likely cheating on her, and collects herself so that she can go to the Holiday event at her children’s school without freaking them the hell out?


I repeat a scene much like that…on a pretty regular basis.

Not because I’m in a relationship with someone who is unfaithful.

Or maybe I am…in a way.

I repeat that scene…a deliberate pause, tears threatening and heart pumping, followed by a visible resolve to soldier through despite the pain…on a disturbingly regular basis, because I live in a country where a black man is seen as a threat simply for being a black man.

Longtime readers know a bit about my brother…that he is the older of my two older siblings and he has autism. He is aphasic, and he makes loud funky noises…he gets excited when he likes a song and he twirls and dances.  He looks “normal”…a lot younger than his 43 years, but still “normal” in presentation if not behavior.

So, I know that his behavior could get him beat up or shot.

He likes to look in car windows.

He doesn’t understand “the rules.”

He likes people…and the smell of freshly washed hair or French fries on someone’s plate.

We work on it with him…we watch him closely.

Because we live in a country where black men get shot and killed for seeking help after a car accident…or refusing to turn down music…or walking home after going to the corner store.

I don’t know how to guide him.

I just don’t know what to do!

Do I tell him to seek help if he gets lost?

Do I tell him to find a police officer?

What will happen when he can’t speak or explain?

Will strangers try to understand?

Or will they open fire and ask questions later?

And so, on a regular basis…at least once a week, and sometime more often than that…I find myself in the bathroom preparing to go to work and I pause to grab the counter, take several deep breathes and then smoothing my hands down the front of my outfit.

I breathe in.

Exhale.

Repeat.

Because I have to go about my day despite the anxiety and fear.

I don’t want to become that sister who won’t approve any community outings. I've come up with this ritual so that my brother can have some semblance of a life despite the world we live in and the dangers it presents.

Breath in.

Exhale.

Grab car keys…tell self to move forward.

Walk, damn it.

Drive.

Get out of car.

Smile.

Greet others.

Please, please, please…oh, please.

Log on and check email.

Lord, I give him up to you…again…always.

Work.

At least once a week, and lately far more often than that.

Sigh.

So much has changed and so much remains the same.
"In thinking of America, I sometimes find myself admiring her bright blue sky—her grand old woods—her fertile fields—her beautiful rivers— her mighty lakes, and star-crowned mountains. But my rapture is soon checked, my joy is soon turned to mourning. When I remember that all is cursed with the infernal spirit of slaveholding, robbery and wrong,— when I remember that with the waters of her noblest rivers, the tears of my brethren are borne to the ocean, disregarded and forgotten, and that her most fertile fields drink daily of the warm blood of my outraged sisters, I am filled with unutterable loathing, and led to reproach myself that any thing could fall from my lips in praise of such a land. America will not allow her children to love her. She seems bent on compelling those who would be her warmest friends, to be her worst enemies. May God give her repentance before it is too late, is the ardent prayer of my heart. I will continue to pray, labor and wait, believing that she cannot always be insensible to the dictates of justice, or deaf to the voice of humanity."
Frederick Douglass to William Lloyd Garrison - January 1, 1846

32 comments:

Anonymous said...

Thanks for sharing. I am the mom of a 14-year-old autistic son. And I have some similar fears, but not to the same degree as you.... because my son is white.

What you are doing here - reminding the world that black boys and men do not get a fair shake - is important. Please keep it up.

heather ebert said...

Wow! Powerful! I have two autistic kids and while I get the gist of that, I can't even imagine what you are up against! What I have is sincere gratitude for you taking the time to explain the world from your eyes. To share just how imbalanced we actually are. Just remember the first will be last, and the last first. God will not allow unjustice to reign forever. I wish it were different. I will pray for you!

Liz said...

Thank you for posting this.

Paisano said...

I feel for you. What a nightmare to deal with. I can only imagine how it is. I would feel the same way. I hate that despite whatever "progress" we've made since the 1950s we still have a long way to go when it comes to racism and even humanity for that matter. People are too quick to label others and become judge and jury in a heartbeat based on superficial facts such as race and religion or even geographical birth places. Scores of innocent people are killed because of the God they believe in or because their parents happened to do it in the wrong place and time so they were born in the wrong country or county.
Thanks for sharing this gutwrenching piece we all need to know about.

Anonymous said...

Wow! this is so heart wrenching......I am not black but I understand the fear of having my children going out alone to just play. There are many prejudices in this land of ours and not just racial prejudices.
Thank you for sharing this story......

Anonymous said...

I am the mom of a son who is almost 20 who also has autism. He eventually gained language and is "high" functioning and I as you worry about that everyday. In addition to all those things not visible to the eye that are part of autism no matter how "normal" you may look.
Thank you so much for being your brother's keeper. I have two daughters who will be my son's keeper. It is a big responsibility.
I wish I had solution. Society has to change, but many of our men and their sons have to change their behavior and the image they continue to embrace. Throughout my life I have watched my dad, my brothers and my husband undergo that type of treatment and harassment, although they were all law-biding citizens doing what they had the right to.

Ed Steinhauer said...

Since you draw your readers' attention to "Love, Actually," you also bring to mind another character from the movie. The other heart wrenching story that slays me is Laura Linney's character. She's the woman who takes a pass on any semblance of a personal life in order to remain available for her brother, institutionalized for suffering from psychotic attacks. Of course, she doesn't worry, as you clearly do, about her brother's daily survival. Godspeed to you both.

dydowney said...

I am a mom of a son with autism, who is almost 20 and I worry about that every single day. Although he eventually gained language and is considered "high" functioning, he still is autistic and his brain does not process info, situations and stimulus like you and I.
Thank you for being your brother's keeper. I have two daughters who will do the same, if and when I am no longer able to care for him. It is a big responsibility.
I wish I had the solution. Society has to change, but many of our men and their sons have to change what they are doing and let go of that image that we continue embrace.
I have watch my dad, my brothers and my husband being treated disrespectfully and harassed, although they were law abiding citizens doing what they were entitled to do :(

Anonymous said...

I just saw "Love Actually" again and realized how much I hated the film-- all those first world problems, sheesh, but sold on a few brilliant performances.

Still, I know what the author means by that Emma Thompson moment. I've been there so often already and my son is still little. It changes you. I wish it was about something so minor as a spouse cheating instead of fearing for the life of a vulnerable disabled child.

It must have been brutal back when autism was 1 in 10,000 and no one knew what it was. I'm sure there was a hope that if "only people understood this condition" that it would get better. But it's not as if the current epidemic of autism ("increased recognition" my ass) has warmed anyone's hearts.
That human-mob chicken coop tendency to peck to death the hen with the feather out of place didn't go anywhere. Myths abound about the danger and violence of affected individuals these days even if the disabled are 15 times more likely to be victims of assault than to ever commit it.

And now since schools are virtually flooded with affected children, they're either illegally trying to keep them out like the Garde Royale at the Bastille beating back the peasant hordes to keep district curves up, or affected kids are regularly subjected to staff abuse-- restraint and seclusion-- for which there's no legal recourse. It's changing the nature of schools since all potential whistleblowers-- any teacher or school aide with integrity-- has to be flushed out of institutions leaving only the dregs and the most heinous team players. Typical children are being aclimatized to seeing their disabled peers dragged screaming down hallways and stuffed into scream rooms, thrown face down on the ground and sat on, arrested. It's not just the families of the disabled who are being changed. It's the whole country. Whatever brief moment of hope that existing problems might get better are being dampened in part by the fact that we're poisoning generations. And again, it's not as if humanity could ever be trusted to rise to the occasion and care for it's most vulnerable. It's not passing this test either.
(continued).

Anonymous said...

(continued) It's very hard not to withdraw from life under these circumstances. Our son is completely nonviolent but it seems that, in preparation for staff's paranoid vision of him as a future rampaging, breast-grabbing, menacing teen, they began shoving him into a closet from the age of 7 on to prepare him to future institutionalization. We took him out of school when he began coming home with bruises and talked about being assaulted by an aide. When we tried to report it, the Office of Civil rights and child protective services-- which had refused to accept medical documentation and physician testimony of signs of abuse by staff-- helped the school's attempt to retaliate against us. The ACLU said it "didn't take cases like this" (i.e., school abuse of disabled kids) because they were "inundated." We had to beg at the door of every legal aid organization to ward off the spurious attack. Ours is a typical story these days.

I'm sure our Latin name made us seem easier prey to the institutions but I see our story repeated over and over. There are no guaranteed exemptions these days-- not even money-- though there are special shades of "worse" for each atypical feather a family carries-- like being nonwhite, nonrich, single parent families, etc. We now homeschool. But then what?

Autism is PTSD central for all affected families. Plus in harsh economic times, tolerance for the disabled plummets and violence against that population begins to rise. But if you add adult male status (where the current child epidemic is headed and is 5 to one male), racial discrimination and the country's current slide into a feudal police state along with the raped economy and it gets super special.

I feel like we have nowhere to turn. We're risking legal consequences to do simple natural treatments that are helping our son recover-- the school even frowned on the gluten-free diet and the fact that we won't put him on (profitable) drugs with black box warnings for cardiometabolic side effects, male breast growth, suicide and violence. It's not like any other country is a utopia for the disabled but, in some, the abuses aren't quite so systematized and officially sanctioned. That's why we're leaving the country but not everyone has that option. I've been mourning the situation here for years.

Jennifer Garrity said...

I love this. I share so many of these feelings.

Jennifer Garrity said...

I feel you too. Damn world we live in. We just have to keep our heads up, and fight the good fight.

Antonio said...

This is so powerful and resonates deeply with the trials for the killers of Trayvon Martin and Jordan Davis so fresh in my mind.

Kofi White said...

Tell them, nothing has ever been broken as proof of anything.

Mark said...

The Trayvon Martin case, and its outcome, really made me aware of my privilege as a white male for the first time. At first I naively wondered if black people face this every day, and if so, how they dealt with it. Of course they do- and my immediate, paranoid reaction was, "Not my children... never my children." and so it has instilled a deep, paranoid fear in my mind of ever getting intimately involved with a black person. I wish I could say I had a nobler sentiment than that. I wish I knew how to fight these attitudes, and change racism. I wish I could change the fact that every day in my newspaper, black children die by the gun. But it feels so overwhelming. All I can say is, I feel your pain. I feel your pain and I wish I had your courage.

Anonymous said...

The Trayvon Martin case really opened my eyes to the daily, harrowing plight of black people and my own white privilege. I wish I had grand answers I could give.. I wish I had solutions, or could see a way past the fact that every day my newspaper is filled with innocent black children dying by the gun.

But all that case did was make me afraid, make me paranoid to get involved romantically with a black person. I said to myself, "Not my children, never my children, I never want this for them, not if I have a choice."

How do you do it? How do you do it every day, and not become bitter and hateful? How? I admire your courage and your frankness. It is a courage I wish I shared. For now, fear pushes me to my side of the color line.

Anonymous said...

"Lord, I give him up to you.....again......always...."

And that's what you do. And in this incredible sinful world that can't get past the surface of a person's skin, The Lord will camp some awesome fierce angels around the sweet souls such as your brother.

Nana said...

Please give me permission to post your blog post on my blog, http://nantubre.com. (Of course all credit to you along with a link to your blog)
this one is so meaningful and hits the heart so hard, I have to share it.
Some blogs I read make me want to say "Oh my God. Oh my God". This is one.

Pamela Merritt said...

Yes, you can repost with a link back. Thanks for asking!

Hannah Jacobs said...

It's a very scary world out there. The monster on our backs is how the world treats our family members who live with special needs and disabilities. Even the people hired to take care of our family members let us down, shown most recently by the fight club in a Long Island group home. We all need to stand together as family members by teaching the world about disability.

Anonymous said...

You are in my thoughts. Thanks for sharing your experience. I will pass it on.

Jenny Judge said...

So glad our police don't carry guns

Jenny Judge said...

So glad our police don't carry guns routinely for many reasons, but one of them is this (mother of 9yr old autistic boy)

Elizabeth J. (Ibby) Grace said...

Your voice is beautiful and awesome and I'm glad I read this but the opposite of glad it is the truth. Love and solidarity. Love, Ib

Anonymous said...

As an adult on the spectrum, I deal regularly with social and workplace bullying. I know that white privilege plus the fact that I used to be considered (before the recent change in "official" diagnostic terms) an aspie rather than an autie are like two thin veils protecting me from even more vicious forms of hostility. It seems as if even those who eschew(or at least claim to) prejudice based on race, sexual orientation, etc feel free to express towards those who are not neurotypical. I wish schools would teach more acceptance of all forms of difference. I wish that the Buddhist concept of lovingkindness was held as the most admirable quality a person could possess.

So many of us on the spectrum end up on the receiving end of anger even from our families. How wonderful that you offer your brother such loving care.

Ricks Cafe Jamaica said...

thank you for creating awareness through your post. you are doing a fantastic job.

Anonymous said...

I work inside of group homes, and I used to work with a black teenager with autism, and this worried me a lot too. I never let him out of my sight for outings, because of it. In hindsight, it's chilling how much I normalized this. People think this only happens in the south, but even here in Minnesota, black kids are routinely murdered by cops. I can't even imagine how terrifying this reality is for a mother who wants her child to have a life that's not under constant surveillance. My love and solidarity go out to you.

Ben JSM said...

You could move to Australia, we have no guns here, so no risk of getting shot (although one punch kills seem pretty popular atm). I have had a few mentally handicapped folk behave rather abruptly towards me in a way that caught me off guard, then those types that don't require a personal chaperone but still have a screw loose - either way I try to be understanding. It's a shame mental health isn't taken more seriously.

Jeanne said...

First time on your site. You have a beautiful voice - keep it out there, Sister! Thank you. You are truly a caring person.

Valrie said...

First time reader, immediate fan. I am a mother with 2 children who have autism. Although, not plagued terribly by bigotry, as we are mix, but look white, for our color, we still face prejudice. I don't have siblings, their father doesn't have siblings, and their father (my ex) is an ex for a very good reason. I lose sleep at night, worrying what will happen to them when I am gone? My son just turned 13 and already just shy of 6 feet tall. When the cops see a 6'6" HUGE man jumping up and down clapping his hands hooting, will they wait? If I die, what happens to them? And the number of special needs people (especially females) who are abused sexually is terrifying.

You're obviously an eloquent writer, and I'm grateful to TheAutcast for sharing your blog. Keep up the good work please ma'am. And if he can't say it himself, as my son can not, "Thank you" for being your brother's advocate when he cannot do so himself.

Much love

Michelle said...

Heartbreaking and harrowing--and a stark reminder of the fear in our fellow Americans' hearts that their brothers, sisters, sons, and daughters could be dead, simply because they are not white.

We white people take the privileges that come with simply *being white* way too much for granted in this country; these injustices and double standards based on race are wrong and we have to put a stop to them.

Anonymous said...

I know this post is several months old, but I thought I'd comment in the hopes that you'd see it. Violent crime is devastating to whomever it touches and especially devastating when it occurs because of prejudice--racial, because of disability, or whatever. I think the something that has been overlooked in this post, though, is that the vast majority of homicide and violent crime is intraracial. That is, far and away the majority of black violent crime victims are victimized by other black people. Conversely, the vast majority of white victims suffer at the hands of another white person. I'm not minimizing the anxiety that you feel over your brother's safety. I'm just saying let's focus our energy on resolving the real issues that our killing our brothers and sisters, not on the exceptions to the rule.