I was in bed, reading. Joe called to me about a picture he'd seen on Facebook. He described it to me and said that he was horrified by what he saw. This morning when sitting down to go on line, I found piece of paper with notations about how to find the image he'd seen. Joe doesn't usually do this kind of thing so I knew it was something that he really wanted me to see. Even though he had described it to me, nothing could have prepared me for seeing the actual picture. I found it distressing. I found it hurtful. I found it deeply frightening.
Most of the comments, and I only read ten or twelve went on about how beautiful it was and several quoted biblical verses. None said, 'Hey wait, what is this saying.'
Could it be saying:
Well, his horrible life as a disabled child is over and how he is whole in God's kingdom.
And if it's saying that, is it also saying:\
\
This kid, and kids like him, are better off dead.
Could it be saying:
Freedom can't be had in a wheelchair.
Could it be saying:
God bars disabled people from entry, so do some magic to get him through the door.
Could it be saying:
The child is a mistake, death will fix that mistake.
Could it be saying:
In death we finally have the child we wanted all along.
Could it be saying those things?
And here I thought we were making progress. I thought that people were coming to understand that we, as disabled people could lives lives of value and lives of JOY. I thought that people were coming to see us as whole NOW. I thought that people were coming to see the wheelchair as a symbol of transport, of independence. I thought that we were coming to the point where we might even think that heaven would be ramped.
But this picture, and the reaction to it, tells me that, maybe not. Maybe those people who I interact with, who seem to accept me and my life and my contributions, maybe they think that deep inside I desire death to release me from what medicine could not. Maybe those people who celebrate joy with me, the many joys of my life, maybe the do so with a sense of pity, maybe they are thinking ... ah but the joy he will have when finally this life is over and he's freed from the bondage of his existence.
This picture means a lot to many who see it.
It means a lot to me too, and it scares the shit out of me.
Prejudice in concrete and steel.
I am desperate to hear your opinion.
Yes Dave this sort of thing upsets me too. A couple of years ago I went to the funeral of a very dear old friend who used a wheelchair for many decades. I heard an acquaintance of hers say "ah well Cathy is free now". I literally turned on her and said 'Cathy has ALWAYS been free!!!" I was so angry. Grrrr.
ReplyDeleteIt is really quite sick in my view. It is scary because it is giving off a general message to me that we are only liberated after death and so spend your life coping with your so called misery on this earth until the final day is here. That's what subjugated poor people all their lives in lives of poverty, ill health and burdensome work. But this is even worse, it's pitying, it's welcoming his liberation from his life on earth, it's sending him on to a so called better place when he should be here still, enjoying his life to the full and then yes passing over in peace but celebrating with joy the time he has been with us. Sends shivers down my spine!
ReplyDeleteHmmmm......interesting!
ReplyDeleteAs a parent who will bury their child long before them, I looked at it, not as a celebration of who their child aspired to be in heaven, but as who they were on this earth. The purpose of a headstone is to represent who lies beneath. To me, this was a memorial of who this child WAS nothing more, nothing less. A regular headstone would not have conveyed that this person was perfect the way they were on this earth regardless of what others thought when they looked at them.
To me, the saddest thing about this headstone was that some parent only has a concrete representation of their beloved child to visit. I'm once again reminded how time is short, and made me hug my son a bit tighter after seeing it.
Maybe I am just too naive??? Now that you have given a different interpretation of the piece, I am not sure what I feel about it anymore.
Hmmmmmm...........
Hmmm, I'm not sure this is as much about disability as it is about religion. It merely reinforces that Christian belief that everyone will be "freed" and rewarded with eternal happiness in heaven. For those of us who don't believe in those religious ideals I think we are more likely to view something like this as religious folly or silliness not prejudice. That doesn't mean that images like this are ok, they continue to be damaging to those who might be devalued by others who buy into the message they send... But disability isn't the problem here in my opinion.
ReplyDeleteGina.
ReplyDeleteSo, It's not about disability. Then, by your reasoning shouldn't the graveyard be full of monuments of men who are rising out of adultery into a pure state of love or of a woman rising out of poverty, or of a child rising out of a live of victimization at the hands of priests? No. And you won't. Why try to explain away obvious disability prejudice and why tell a disabled person, poor dear, that he got it all wrong. Sheesh.
Anon,I have no problem with someone telling me I've got it all wrong. In this case, I don't think I do though. I appreciate Gina bringing for another point of view and would welcome hearing even more.
ReplyDeleteAnother point of view could be that the little boy had specifically spoken about going to heaven and being able to walk and run and jump. And if that's what gave that child comfort on earth as he was dying, then I could understand the memorial.
ReplyDeleteBut that's only a 'what if'. Without knowing what the child's own wishes were, it simply looks like an act of discrimination - tasteless at best and horrifying at worst.
I think it is beautiful. To me it honours the life he had and the life it is hoped he has after. I see the chair as a launch into what comes next. I know that will be a very unpopular view on this blog and will no doubt be attacked but there it is. Sometimes you just need know that for many there is nothing wrong or less about disability but would you choose it for yourself or your child?
ReplyDeleteDear Dave:
ReplyDeleteWhen my daughter died, some people told me that it was for the best and she was in a better place. Those comments made me furious and I do believe some of them were fueled by the belief that, because she had a disability, she was better off dead.
When my brother died, same thing. He was an adult with Down Syndrome. People actually said that it was a mercy for my Dad because now he would not spend his old age wondering what would happen to my brother after he (my Dad) died. This would be the same Dad who could not bear the thought of taking my brother off life support. More prejudice.
After reading your post, I could see how you could get those same messages from this sculpture/headstone. Obviously the parents who put the headstone up have a strong belief that their son is no longer disabled after death. A very big part of me thinks that if that is what gets them through the death of their child, then leave them to it. I know what it is like to lose a child and it is as difficult as you imagine and then some.
I will have to keep thinking about this post - for now my heart stops at, whatever gets them through it.
Colleen
I saw this on face book as a mother of twins with profound multiple disabilities one who lives in heaven MATHEW AN ONE WHO LIVE ON EARTH. ALSO AS A MOTHER WHO IS OXYGEN DEPENDENT. I AM NOT THE MOTHER WOMEN SISTER CHRISTIAN THAT MEASURES MY SUCCESS ON WHAT I DONT HAVE.
ReplyDeleteWHEN MY PRECIOUS SON Mathew dies 6 years ago at 9 his life was a celebration of 1000s I can't example that so many people beleiveived MATHEW WAS FREE CURED AND AT PEACE. I KNOW IN MY MOTHERS HEART THE HEART OF JESUS THAT Mathew was already cured at peace he loved well he touched thousands with his precious with his few words with his spirit.
I believe we have a responsibility to include our children/adults in community to break down the fear stigma predujice..because once the is broken then we see people as oh that is Mathew who has autism and uses a wheel chair not oh that's the kid who can't walk and talk poor thing.
The picture also captured my heart as my son tyler now 16 has lost ability to talk walk read right feed self..wears a diaper. Has seizures,he has regressed significantly. However I see so much joy despite the constant regression. Tyler without a word can hug you and kiss you and move you tears of laughter. I see the wheelchair as an extension of my sons journey. Again the only way to see joy change love is to be part of a community. For the 1000s of young people in Mathew and tylers who have touched changed loved sang danced with cleaned him bathed him prayed for them this picture to me is not a said depressive peace of art but a movement to celebrate joy at all times..
Joanna frank
I saw this on face book as a mother of twins with profound multiple disabilities one who lives in heaven MATHEW AN ONE WHO LIVE ON EARTH. ALSO AS A MOTHER WHO IS OXYGEN DEPENDENT. I AM NOT THE MOTHER WOMEN SISTER CHRISTIAN THAT MEASURES MY SUCCESS ON WHAT I DONT HAVE.
ReplyDeleteWHEN MY PRECIOUS SON Mathew dies 6 years ago at 9 his life was a celebration of 1000s I can't example that so many people beleiveived MATHEW WAS FREE CURED AND AT PEACE. I KNOW IN MY MOTHERS HEART THE HEART OF JESUS THAT Mathew was already cured at peace he loved well he touched thousands with his precious with his few words with his spirit.
I believe we have a responsibility to include our children/adults in community to break down the fear stigma predujice..because once the is broken then we see people as oh that is Mathew who has autism and uses a wheel chair not oh that's the kid who can't walk and talk poor thing.
The picture also captured my heart as my son tyler now 16 has lost ability to talk walk read right feed self..wears a diaper. Has seizures,he has regressed significantly. However I see so much joy despite the constant regression. Tyler without a word can hug you and kiss you and move you tears of laughter. I see the wheelchair as an extension of my sons journey. Again the only way to see joy change love is to be part of a community. For the 1000s of young people in Mathew and tylers who have touched changed loved sang danced with cleaned him bathed him prayed for them this picture to me is not a said depressive peace of art but a movement to celebrate joy at all times..
Joanna frank
Oops, sorry Dave. Absolutely not disagreeing with you, what I was trying to say is that I think religion has a lot more to answer for than people are prepared to accept around these mindsets. If religion celebrates death because it "frees" people from disability then religion needs to be challenged.
ReplyDeleteDave and Joe, (Joe thanks for seeing the power in this photo and directing it to Dave!)
ReplyDeleteThere is a clear message, in the scuplture itself, the comments you describe, the sentiments of prejudice you sense. I have been spending a lot of time all around the country (United States)consulting and teaching about direct support ethics and it still AMAZES me how many professional people use prejudicial and damning language related to people who use wheelchairs....wheelchair-bound, wheelchair-ridden, etc. Then, furthermore there are tons of PROFESSIONAL PEOPLE IN THE WORLD OF DISABILITY SUPPORT who haven't the slightest clue about etiquette and grace when interacting and communicating and respecting a person's wheelchair. Add that to the deep religious views about salvation, paradise and whatever one's view of heaven may be(a place where the sins and pain of the earthly world are vanished) well... this leads directly, in my humble but strong opinion, that yes Dave, your hypothesis is correct. There is lots of concrete prejudice still around and in this situation, death(the barrier free, no need for ramps and entirely accessible afterlife) is the only thing that is a hope for people who have disabilities. I admit this one has bummed me out. Thank you anyway. Such food for thought and indigestion.
Yes, there are religions that specify that we will be at our ideal physical selves in the afterlife: permanently 25 years old and able-bodied. I personally don't see the appeal but many do.
ReplyDeleteThis person died as a child. I wonder if he suffered. Some parents suffer and project their suffering into the child; some children do suffer. This elaborate monument may have meant something very personal to the parents, different from what the Facebook-sharers see or project. I don't know anything about the lives of the particular parents and the child who died so I won't pass judgement on that family.
But the Facebook sharers? I'd feel free to challenge them.
I saw that when I was scrolling on Facebook yesterday. It hit me as very strange. I didn't have the time at the moment to think it through, but I did immediately think "wonder what Dave would say about that". I meant to go back and look at it again and read the comments, but I didn’t.
ReplyDeleteI think you’re mostly right, but I think you might be exaggerating the “where we are” a bit. Heaven is about being freed from anything that we see as a limitation. When someone dies after an illness, you often hear that "he's not in pain anymore"? So, I think you're mostly right. I think it's simply that his life as a disabled child in a wheelchair is over and he is whole in God's kingdom – because what most people think as “whole” means physically and mentally perfect. Legs that don’t walk are not considered perfect, and neither are brains that process slower than the average brain. And I think most of us could make a list of things about ourselves that would be “fixed” when we die.
Plus – I don’t think most people think man-made objects go to heaven – heck, most people don’t think their pets go to heaven, so why would they think a cane or a wheelchair would go with you? I don't know if you can go so far as to say people think lives lived in wheelchair are without joy or "horrible". If you believe that all our lives are limiting and we are all going to be free in heaven - and none of us are now - then his disability - his limits - were just more obvious and easily depicted in concrete.
However, it certainly shows that we're not to the point where we "see people as whole NOW". And, honestly, that doesn't shock me. I didn't think we were quite there yet.
It made me think of that movie - I had to Google it to remember the name - Miracle in Lane 2 - about Justin Yoder, who was disabled and raced in soapbox derbies. I don't know if there was anything offensive in that movie, but I remember the end struck me as so brilliant at the time - where God shows him a heaven with people in wheelchairs .
Anyway, the more I look at it, the more it creeps me out. I wouldn't expect to go to a cemetery to “visit” a love one and to be constantly reminded of something about their physicality. It's where you go to think of who that person was to you. If the parents or whoever ordered this monument only see this boy as a boy in a wheelchair who needed to be freed, then I think I pity them. It’s just such a one-dimensional way of thinking of someone you love.
I would like to get the opinions of parents whose children use wheelchairs to see if they have a different opinion. Sometimes others interpret things completely differently.
Breathe-It's a God Thing - This brought tears to my eyes. How beautifully written!
ReplyDelete"Mathew was already cured at peace he loved well he touched thousands with his precious with his few words with his spirit."
I don't see anything wrong with it. I see it as parents who had to let their child go long before they should have. I see it as parents rejoicing because their son is with God where there is no pain no obstacles only joy. We don't know what was wrong with this boy but it apparently took his life. Maybe it had nothing to do with the wheelchair. Maybe something else took his life. Regardless he is in paradise now with God. And I'm sure his parents picture him running. God gave us legs to walk, and run and play. Just because sometime they don't work for us here doesn't mean the parents cannot believe that their boy is in heaven using his legs. My daughter has DS and when i think of her in heaven i do picture her without the mental delays and challenges. We all have disabilities or things that make us imperfect. every single person in the world.. no exceptions. Whatever that is for each of us i do believe we will not carry them with us to heaven.
ReplyDeleteall i know is i gasped when i saw it, and not in a good way.
ReplyDeletealso: a lot of religion has something against PWD. after all, isn't our very existence an effect of sin having come into the world at the fall?! surely Adam and Eve didn't have disabilities. except, you know, that whole thing about being human. but that doesn't count.
so i think it would have been lovely to show him rolling fast in a horizontal direction, like on the ground, with the wind in his hair, if that was something he liked to do. or maybe playing at his favorite action figures or games or hobbies, from the mobility of his chair.
Reading the comments has softened my viewpoint. I feel horror when I look at the photo for the reasons Dave has eloquently outlined. There's also something about the specific representation of child-ness that is also creepy.
ReplyDeleteHowever, as a memorial in a cemetery put up by a family for a son, a relative they loved, I have no right to comment, and no doubt never would have, had it not appeared on facebook. Tradition, memorialisation and bereavement are deeply personal experiences with personal expression which I wouldn't judge.
The picture circulating on facebook with only 1 viewpoint represented in the comments strikes me as tasteless and disturbing.
As an antidote, can I tell you about the latest series of pics on this facebook site?
www.facebook.com/DisabilityAndRepresentation
I can not think of a more respectful pure moment of time in a parents life that would be pulled from creating a headstone for their child. It would only come from faith, love and respect. I am kinda appalled that we are judging that. I think it to be beautiful.
ReplyDeleteI was horrified when I saw this randomly posted on Facebook and even more horrified that people were finding this inspiring. Just awful.
ReplyDeleteI am conflicted. This is what many religions teach their followers--that what we were denied on earth (use of our legs, ability to breathe without assistance, etc) is restored in heaven. You are up against many thousands of years of dogma on this one.
ReplyDeleteMore importantly, the parents of this child found this monument appropriate and comforting. They've got precious little to comfort them now their child is gone--do we want to shame them for how they chose to express their feelings?
Sue
Matthew's obituary, if you are interested. I'm wondering how reading it may affect your view of his headstone.
ReplyDeleteI feel only compassion for his family at the loss of their son. I think people's interpretation of the headstone's motives may be way off.
I think we all see it as we want/need to. Some of us see it as beautiful and a tribute to the wonders that God has bestowed upon each and every one of us disabled or not (putting in here that I work with adults with disabilities and feel that they give more to me than my able friends ever could)and others read it more intensely. I don't think any of us are right or wrong. I believe we see it from the experiences we have had or beliefs we have grown up or learned. We just are. God has made us all exactly how he wants us and he never makes mistakes. God bless you all!
ReplyDeleteThe statue may have brought some comfort to a family that lost their precious child. I understand how it may be offensive to those with disabilities. As a disabled person, I feel the statue is not about me, but is about parents trying to overcome the sadness of losing their beloved child. If they can take comfort from the image, I will not judge.
ReplyDeleteI imagine the family would be horrified that their memorial to their child is causing such a stir on social media.
I write this repectfully and love that we can share safely here.
You know what angers me about this discussion? There is an assumption that 'religious people' or people who say things like "she is free now", are in fact saying "her disabled life was worthless and horrible". That's a logical fallacy, and a huge leap for an outside observer to make.
ReplyDeleteJust because someone finds comfort in thinking that their best friend is finally FREE OF PAIN AND DOESN'T HAVE CANCER ANYMORE, or that their son is FINALLY FREE OF PAIN AND CAN CHASE HIS DOG AROUND THE YARD LIKE HE ALWAYS WANTED TO, doesn't necessarily mean they think that person's life was worthless and horrible. It doesn't mean "Darn it, he could have been such a great kid, too bad he was ruined by his disability."
It MIGHT mean "I wish my son hadn't had to suffer so much in his time here on earth." And I don't see anything wrong with feeling like that - it's a natural and right thing to have compassion for the sufferings of others. I know it's not a popular sentiment in the disability community, and notice I didn't say the word "pity", which seems to be a grenade into any conversation on the subject.
Do I love the headstone? Not really. Do I have any right at all to judge the parents and decide I know all about their feelings? Not even a little bit.
I've tried to write something that would adequately express my complicated emotions and thoughts about this statue, the responses it received on facebook, your post about it, the responses here.
ReplyDeleteI struggle.
Certainly some of the praise for the image is from a specific religious viewpoint in which everything is 'better' in the next life and all 'suffering' is taken away there. Certainly that frames 'being in a wheelchair' as automatically 'suffering,' which is an absurd conflation of two quite different ideas.
Certainly some of the most egregious non-comfort I have received has involved 'look on the bright side, at least so-and-so isn't suffering anymore.' Which often feels to me like the subtext is 'I can't stand to see you cry so let me offer some un-thought-out platitude so I can feel like I did my duty'.
I think you're spot on about the implications of the picture. We're not in a position to know what the child himself might have said or thought about his situation as he was dying, nor what the parents' religious or cultural beliefs were. But the commenters about the picture make crystal clear our continuing cultural prejudice against disabled people - chiefly, I think, because we normies don't want 'that' to happen to us.
I struggle to be coherent, not to mention concise. But what I really want is to say, I so appreciate the work you put into this blog, and I so feel for the pain this picture caused you.
Dave, I think you're exactly right about this. The headstone is offensive. It's hard not to feel for any parents in that situation, so I'm not without sympathy -- but it sends a bad message about wheelchair users.
ReplyDeleteI think it's shorthand. And what I think of it (without judging the parents who've lost their child) depends on what the wheelchair is shorthand for.
ReplyDeleteMy foster son uses a wheelchair. He also lives with a lot of pain and much frustration due to the severity of his disabilities - he would love to be able to move at least some of his body, and to eat and drink without struggle and choking, and to communicate so that others can understand him. He is also a wonderful person who above all is FUN to be with.
If I think of him in Heaven, how could I not want for him to be free of pain and limitations? Just as if I think of myself in Heaven I'd like to think I might become someone who is fun to be with!
Your comments, Dave, will make me more careful about using wheelchair as shorthand. Thank you for being thought-provoking, as always.
I saw this on FB and couldn't really articulate my dislike of it. It just struck me as off. I remember another discussion on FB about whether our kids would be "cured" of Down syndrome in heaven. Once again, didn't sit well with me. I understand the thought behind it, no more challenges, struggles, whatever. But Claire without Down syndrome just isn't Claire...And I just can't imagine her being someone totally different in heaven.
ReplyDeleteI don't condemn the parents. I don't know the parents or their motivations or how they interpret the meaning of this statue in relation to their son and his life (and loss). I am guessing possibly they have little connection to the disability community (possibly to other parents but not as much to adults with disabilities) and thus might not have been aware of the different ways that people from different experiences and backgrounds might perceive this statue. They almost certainly would not have envisioned this image receiving such widespread circulation and such close scrutiny among anyone who didn't know their child personally.
ReplyDeleteI certainly don't wish the parents any more pain or hardship than what they have experienced already. But I do think it is still valid to talk about how OTHER people interpret this image. And why so many people in Facebook feel compelled to circulate it and praise it. I think the ways that people OTHER than the boy's family perceive and interpret the image says a lot about how disabilities are often perceived in society.
I think for a lot of people, wheelchairs do represent a kind of "shorthand" (to borrow the term others in this comment thread are using). And any usage of "wheelchair as shorthand" tends to come with a very long laundry list of possible meanings and interpretations with it. Probably most people who create a particular "wheelchair as shorthand" kind of image only have one particular subset of interpretations and meanings in mind. And if they mostly associate with people who come from a similar frame of reference when confronting "wheelchair as shorthand" they may not even realize that people from other frames of reference may end up with a radically different interpretation of what meaning is being conveyed by their "wheelchair as shorthand" than they intended. And this, to me, is why people should be extremely cautious about using "wheelchair as shorthand". Because their own personal interpratation of what their own use of "wheelchair as shorthand" cannot erase the very long history that may lay behind the interpretation that many others may impose onto it.
For example, although some wheelchair users do experience pain (in fact some use wheelchairs precisely BECAUSE of their pain), many do not. Thus, a wheelchair shouldn't be used as a shorthand for pain because that's not a universal experience of wheelchair users and, thus, not everyone will read the wheelchair as representing pain. Same for "suffering". Or "experiencing limitations". If all you mean to say is, "I wish my loved one did not have to experience pain. Or the inability to do certain things that she/he has made clear they WANT to do. Or the lost of valued abilities they used to have. Or, fill in the blank with whatever" ... well, a wheelchair doesn't really cover it that well because only a certain portion of your audience will associate a wheelchair with any of those things. I think it's almost inevitable for "freedom from wheelchair as shorthand" to be interpreted as ... well, exactly that. Freedom from the wheelchair. Or else, freedom from having a disability. Because, really, those are the only two factors that can be said to be more or less universal among all wheelchair users.
Andrea S
Sickening . . . a real warning for us all. Of course, we will all want to hug our child a bit more closely when we are reminded of the possibility of loss . . . AND seeing that loss as a good thing is . . . well . . . sickening! (PS - this is the Paul Lattimer mentality in concrete!)
ReplyDeleteI am having a very hard time with discussion. I think that if we were discussing an advertising campaign that would be very different then a child's grave marker. I believe that this family made what they thought was the best choice for them and their loved one. I would hope that when a loved one of mine dies that how I choose to honour them is not questioned and made a discussion on social media. I think that this discussion has value and points that I agree with, I just feel very uncomfortable of this discussion around a child's grave marker.
ReplyDeleteL
Multiple meanings, and it's very complex, but I've felt the same thing before, Dave. People who only stop by the group home once a week to take their son or daughter to church, then leave afterward--that chilled me to the bone every time. Brings up interesting questions about medication. Will there be lithium in heaven? Will someone suddenly cease to be averbal and somehow gain that college education and socialization that many of us take for granted?
ReplyDeleteI don't think there is a "real" you inside your body, Dave, any more than I think there is a "real" me inside my body. It's all me, all my alters are still me too, and it's my body, and that's the way life works. We pity others, I believe, when they somehow don't stand up to our personal standards. As you've said many times, Dave, PISS ON PITY. Let's try sympathy, which is actually a very deep philosophical term.
I'm also thinking that I'll be asking for more of your advice (as I said before, feel free anytime to give me as many pointers as you wish), because I'm not finding Face Book to be very user-friendly. I thought it was the most advanced networking place on the planet. Is there another one? For example, I thought I knew the difference between a "friend" and an "acquaintance." Guess I'll have to look it up in the philosophy lexicon to get it straight. [end rant]
ReplyDeleteDave,
ReplyDeleteI think that is why it felt so wrong reading ME BEFORE YOU by Jojo Moyes. Because the guy in it was granted suicide even though he found love. A life he could not live to the fullest after a spinal cord injury wasnt worth living for him. The book was so disturbing for me, as this image is for you. Please if you will find the time any day, tell me what you think about this book.
Thank you
Julia
(Still not living life to the fullest but working everyday to get there...)
My nine-year-old brother used a wheelchair. In fact, he loved his wheelchair. It was fancy and had every upgrade my parents could afford. It had a huge decal of the "Bad Boy" logo on it. That last feature was very cool at school. This chair was so cool that the principal helped my brother show it off to every classroom when he first got it. In his short life, that chair was all about freedom. In his early death, every one of the many condolence cards we received spoke of the fact that "he's free now". They didn't get it and they mightn't ever. Freedom didn't come through death, freedom came from choosing to live the heck out of the short time he had. Those wheels didn't confine, they broke barriers.
ReplyDeleteI understand your concern, Dave, and I've been bothered by inspiration porn in other places but I find it very, very difficult to question a family's decision in their moment of grief. We don't know how much pain the boy was in, we don't know how he felt about his chair, & we don't know how the family treated him or how they felt about his disability. I suspect they passionately wish he were still at home with them, in his chair or not. I do object to the photo circulating on FB both because it seems intensely personal and because all the commentary focused exactly on what you pointed out, but my problem is with the re-posters, not the people that lost their son.
ReplyDeleteAlso just thinking about how this image reminds me of the cover of my copy of Helen Keller's *Story of My Life.* It's this great photo of her just leaping for joy, that's the only way I could describe it. There's this great line about how, when company called, she was always brought out by her parents to visit. Seemingly small moments like that had a tremendous impact on her life and the successes she had. Just lately came to the conclusion that Jim Morrison may have had DID. I'm thinking a lot lately about connections between folks like Keller and Morrison. If you look at their respective contexts and the people with whom they were involved, the importance of social relationships really comes into focus quite sharply. Dave, as usual, this is very compelling writing that you are doing.
ReplyDeleteWhat about an article on the role of technology and "disability?" And/Or aesthetics? It really depends on how one views the wheelchair, doesn't it? If someone bolts a wheelchair to the wall, is that art? Hey, I think that should be a theme at MOMA, Dave, or maybe the Guggenheim. If they can do Armani suits along with Russian avant-garde (I saw that years ago and enjoyed it), then they can do such an exhibit.
ReplyDeleteHeaven is portrayed (in scripture)as a place of no more pain or suffering. We also are to have bodies like Christ's resurrected body. I feel the sculptur/headstone being discussed offers hope for all those fettered - by lack of mobility, lack of speech, lack of character - for we shall be made whole. Note Christ still bore the nail marks in His hands.
ReplyDeleteFanny Crosby - famed hymn writer, who happened to be blind almost from birth, claimed that she wouldn't take sight if offered to her. For she felt it would have been a distraction from her praise. She also looked forward to glory where the first face she would see would be her Saviour's.
This is hope.
I long to leave this body behind with it's failing parts, aches and pains. Give me a new body for sure. More important than the physical is the spiritual. I will finally be free from sin, any spiteful thoughts, or wrong motives. Everyone will be equal - all saved by grace - nothing of ourselves. That will be wonderful.
There are no extra points for suffering.
Whoa!! I lectured yesterday and then drove for several hours. I'm only now seeing all these comments. It's going to take me a long while to read them and consider people's points of view. I wondered if the 'art' would inspire debate and dispute and it seems like it has. I do want to say that 1) wheelchair use does not necessarily equate to suffering (and that view is what fuels the 'cure or eliminate' approach that we are familiar with) 2) absolutely the family has a right to put up whatever they wish and express themselves however they wish I don't quibble with that at all - however if you put up art, then art will do what art does, inspire commentary. I did not look at the child's name nor read anything about his life or death, because the issue here is the art and what the art says. You may disagree and, as I've indicated, I'm good with that. Anyways, I'm going to read the comments over again when I get to our next destination tonight and have some time to read and think.
ReplyDeleteHi Dave, thanks for sharing this. But if I may, I'd like to try and share my first impression of this photo. I too get around in a wheelchair and have had C.P. since birth. Unlike most here who've commented, I did/do not see this gravestone as ableism or an offense to individuals with disabilities. I saw it as a message of joy and hope from from and a reminder to the family. I saw it as them saying Matthew is now unencumbered by any limitation. I don't think his family was anti-disability at all. From his obit it sounded like he was loved very much and looked up to.
ReplyDeleteThat's just my two cents.
Oh, my. I don't even know how to articulate my thoughts about this. Except:
ReplyDeleteHis name is Matthew.
My son's name is Matthew, too.
And that's as far as I get, because I can't type through these tears...
I have MS. For 32 years now. My first two years I spent in a wheelchair. My third year I spent getting out of the wheelchair, using a walker, a pair of forearm crutches, then one crutch, then finally nothing.
ReplyDeleteWhile I was in the chair, the first several months were the toughest, then I learned to use the bus lift. Then I gained the strength to push myself to the bus stop. So while I was using a chair, I had freedom to come and go as I pleased. I was lucky in that regard.
After the third year I had about 16 years with invisible disability, though I couldn't run to save my life, or to dodge a turning car, if need be, Still, I was "unencumbered." Then I started having relapses again, with more disability accruing after each one. I first started using one crutch, then a walker, then a wheelchair for distance, now a wheeled walker with difficulty inside, and wanting an electric wheelchair for my freedom again.
Life = change. Freedom can be had in a wheelchair, I agree with you. But the feeling I had when I saw that picture was of joy - pure joy - of (a child) living an unencumbered life.
We are all the sum of our experiences.
ReplyDeleteThe wheelchair is part of that child. To me, to picture him without it is the same as picturing him without his head. It's just not right.
Hi Dave - please read the last couple of blog entries here http://www.kateleong.com/ I am a parent too, of a young man with severe disabilities and of an able-bodied daughter. All I can say is that my heart breaks for this family ... there by the Grace of God go we.
ReplyDeleteI wrote about this very same picture on my blog... http://www.jonbateman.ca/what-do-you-see-when-you-look-at-this-picture I think giving the impression that life is somehow better after you're dead when you have a disability is a sad commentary to relay.
ReplyDeleteI am sorry, but we don't know the story behind this tombstone so I really don't think that ANYONE should be judging whether it's offensive or not. Before jumping to conclusions why not ask the parents and family who had to bury him why they chose this tombstone?
ReplyDelete"My daughter has DS and when i think of her in heaven i do picture her without the mental delays and challenges."
ReplyDeleteEssentially what that means is that you think your daughter will never make it to Heaven. Instead, there will be some stranger with a superficial resemblance to her.
Your mind is who you are. If your disability affects your mind, then it affects who you are. I'm autistic, and that cannot be separated from who I am. If someone told me that I would not be autistic in Heaven, I would rather go to Hell if it meant I stayed me.
My son was born with alot of medical problems on Dec 24, 1998 the drs said he wouldn't live to be 1yrs old. They was wrong, he passed on Feb 5,2013 at the age of 14yrs old. Drs said he was a miracle child. For 14yrs I have watched my son fight to live for 14yrs,he could walk,talk,eat by mouth,he lived his life in a wheelchair. When u have a child who can not play with his younger brother, he couldn't run laugh walk or play. I miss my son more and more everyday, time does not heal. Im so shocked to see how many people has a problem with this headstone. First of all its very disrespectful for anyone to talk bad bout a childs headstone. Second of all, If you dont have a child who lives their life in a wheelchair, who has medical problems, u watch them suffer, being in pain,not able to do anything. I love this headstone, i wish i could afford it. But knowing ur child is up in Heaven walking and talking laughing and playing free from pain.. he doesn't need a wheelchair anymore. Religion shouldn't even be mentioned, nor does anyone who thinks this headstone is wrong.. U clearly dont know nothing about having a disabled child, nor lost a child.
ReplyDelete