How Her Brother’s Seizure Inspired Her Award-Winning Sculpture

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When Tess Dumon was 12 years old, her brother Louis had a seizure she’ll never forget. Louis has autism and epilepsy, so Dumon was accustomed to watching everything from barely noticeable seizures to ones where Louis fell to the ground, Dumon told The Mighty.

That day was different though. Louis, then 14, slipped into a coma lasting several hours after compulsively seizing. As he laid limp in their mother’s arms, Dumon stared at the anti-epiletic medicine and valium syringes across the table, according to The Other Studio.

Dumon, who’s pursuing a master’s degree from the Royal College of Art in London, has always used her memories and relationship with her brother as inspiration for her art.

“I used to draw portraits of him a lot, and he would sit still and stare at me while I was drawing,” Dumon, now 24, told The Mighty. “This was a nice experience at the beginning of my work.”

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The memory of Louis’s seizure and coma left a lasting effect on Dumon. She recently turned the memory into art — specifically, into four horses made of chicken wire. Louis is nonverbal but has a special relationship with horses. He started horse therapy about ten years ago.

“[Horses] have a soul, but only a few humans managed to reach to it,” Dumon told The Mighty. “It’s the same thing for my brother, I think the few that can reach his soul are horses and family.”

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Her installation, titled “Stabat Mater (Lorasifar, Depakin, Tegretol & Circadin),” won first place in an art contest held by Central Saint Martins, where she earned her undergraduate degree. The title of her piece is twofold. Stabat Mater is a 13th century hymn that describes the Virgin Mary’s sorrow at the cross, according to the University of Dayton. The four horses, Lorasifar, Depakin, Tegretol and Circadin, are named after Louis’ epilepsy medications — the same medications she stared at that day Louis slipped into a coma.

“I didn’t have to look far in this particular memory to find the perfect names,” Dumon told The Mighty.

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These sculptures, which each took about a month, represent a lot for Dumon. She doesn’t think she’ll ever completely understand her brother, but she’s happy he can connect to horses.

“Nobody has enlightened me on life more than my brother, even if it’s hard to communicate,” Dumon told The Mighty. “I tell him regularly that he inspires me.”

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Why This Dad Is Turning His Son With Down Syndrome Into a Social Media Star

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Meet the little boy who’s helping to dispel stereotypes all around the world.

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Photo from the My Son Jack Facebook page

Jack Clayton, a 20-month-old toddler with Down syndrome, is currently winning over the Internet with his adorable smile and charming antics. He’s become popular thanks to his Twitter and Facebook pages, which currently have more than 12,000 followers combined.

Jack’s dad, Lawrence Clayton, started the social media pages because he wanted to show people that Down syndrome doesn’t define who his son is, Clayton told Metro. The proud father from Stockport, England, frequently posts photos of Jack playing on the swings, spending time with his parents and siblings and just being silly.

Clayton doesn’t ignore his son’s condition in his posts, either. Jack has overcome serious health conditions over the last year, including pneumonia and acid reflux. He’s also scheduled to have an exploratory chest surgery later this year, Metro reported.

More than anything, Clayton wants to prove that just because these complications exist doesn’t mean Jack can’t live a happy, fulfilling life.

[Down syndrome is] just one element of his life,” Clayton told Metro. “We want to bring disability to the forefront of social media so that people can see this for themselves.”

Take a look at more photos of the adorable toddler below.

To keep up with Jack and his family, visit his Twitter and Facebook pages.

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When I Called Out My Mom for Not Using Person-First Language

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As a parent of a child with special needs, I feel it’s our quest to promote acceptance, inclusion, person-first language and so on, but how do we do this without alienating ourselves?

How do we educate those around us to understand why certain language and comments can offend us without pushing them away and making them afraid to approach us again through fear of saying the wrong thing?

I have been thinking about this a lot lately.

My personal approach is laid-back and easygoing. If a person’s intention and heart is in the right place, I won’t jump down their throat if they say the wrong thing. But it’s different if they use the R-word. It’s the only word that will fire me up because it’s plain awful and derogatory toward our kids.

At the same time, if we stay silent, how can we shift attitudes and help our wider community learn how to respectfully approach and talk to and about a child with a disability?

I believe it must be approached with patience and a gentle nature. What you radiate is what you often receive back (it’s also known as karma). If you’re kind, warm and open, people will feel at ease talking with you.

If you’re aggressive or critical to someone trying to talk to you, chances are they’ll do the same back or retreat and not approach you again.

I failed miserably at this yesterday with my own mother! I called her out for not using person-first language. She was telling me about meeting a “Down syndrome man” and his carer at the supermarket. I cut her off and said “a man with Down syndrome, Mom!” She was quite rightfully taken back, and I realized I had done the wrong thing by being abrupt and ruined what should have been a meaningful conversation about the happy exchange she had. It really didn’t matter that she had said “a Down syndrome man” because she was coming from a place of love and acceptance. She does, after all, have a grandson with Down syndrome!

How could I have handled this better? By listening to her story without cutting her off and correcting her (I’d just like to add that I was horrendously sleep-deprived, too). I should have waited and gently said to her later why person-first language is important to me and what it means to put a person before their diagnosis. Or I could have let it go.

To family, friends or the stranger in the supermarket, how can you approach a special needs parent or person with a disability without feeling like you may say the wrong thing? Be kind, warm and open. Please don’t make assumptions that our life is sad; no pity, please. Empathy is different and quite welcome.

Please don’t stop asking questions. We need you to be patient with us as well. Some days we’re overly protective and sensitive. We’re facing challenges that are hard at times, and if you catch us on one of those days, we might appear closed off and distant, but deep down your interaction and interest in our family mean the world to us.

Every kind word and bit of encouragement can change our day. Some of my most meaningful exchanges with strangers don’t involve words, they involve smiles. When someone looks at our son and smiles one of those big, warm, loving smiles, it speaks volumes.

The pendulum swings both ways. We must give each other a break and practice being kind and gentle. Kindness can be mistaken for weakness in this world, but I believe being kind wins — always.

It’s more important to be kind than it is to be right all the time. After all, it’s lonely up on that high horse.

Ange Longbottom the mighty.1-001

Follow this journey on About Ash.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Photo credit: Golden Moments Photography

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To the Parents of Children With Special Needs: I Want You to Realize This

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Dear Parents of Children With Special Needs,

You are not invisible. I see you every day when I’m doing ordinary things. You, too, are often immersed in the mundane: mingling with the rest of the world at the grocery store, taking a walk in the park, running errands and attending church.

I see you clearly, like the crisp dawn after a hazy winter’s evening. I watch your hidden heroism, which I know you wouldn’t claim for yourself. It’s an awkward, uncomfortable title because you do what anyone would do for their children, after all.

But you don’t know that I notice you because I’m one of many among the crowds of people surrounding us in this bustling world. I look up from my list or book or hymnal, and I know the weariness you wear in your eyes. I see the worry on your face and the joy in your heart. Your patience, tenderness and loving care as you fold wheelchairs, adjust tracheostomy tubes and quietly redirect socially inappropriate comments often carry me through the drowsiness of my days. I see you and your actions of charity, and I’m humbled as I slip away, unnoticed by you.

I want you to realize that you live and walk among many other people who notice you and are changed by your unspoken witness of love. Not everyone will have the opportunity to tell you they see you, you’re doing a fabulous job and that you — and your children — matter. And yet, they will think it, internalize it and be forever changed because of something you don’t even know you’re doing.

You return to your homes, sometimes discouraged and drained, and you wonder if the small — and exemplary — things you do each day truly make a difference. You might feel isolated, alone and often frustrated at your inability to relate to typical families. But your child has abundantly blessed your life beyond measure (and countless other lives, too), and though life is tough, you wouldn’t change anything about it.

The truth is, you have learned that the greatest, most rewarding and satisfying aspects of your life are those fraught with sacrificial love. The fruits of your sacrifices are gleaming in the light of your child’s eyes, in the kind comments of your other children and in the gestures of thoughtfulness and chances you give other parents and children to love you and your child.

I know this profoundly, but how? I know you fleetingly, and yet you only know me by a smile or subtle nod as you resume your daily activities. But I will never forget you. You remind me of what kind of parent I aspire to be, how much more I hope to give to my children and how much less of myself I hope to possess.

I know this because I, too, am a parent of children with special needs.

Sometimes the roles are reversed, and I’m where you are now. Sometimes I’m out and about with my children, doing typical and routine activities. And sometimes I return home to the same things you do: laundry, dishes, an unkempt house and mountains of chores. I do this without thinking, and yet — perhaps — there is someone out there who saw me with my daughters, too. Perhaps they noticed in a hidden way, and yet their hearts were touched by what they saw.

Please know that despite the often brutal cruelty with which you may be met at times, there are many more people who acknowledge your sacrificial love and the joy that supplants transitory happiness. They may not say anything to you because they haven’t been given a chance, or they aren’t sure what to say, but they will never forget you. They, too, may have a story of caregiving of others. You will remind them of this but in a fond and delicate way.

You are not forgotten, and you are not invisible. You are the heroes and heroines of our modern day, and your children are the superheroes because they rescue us from a false sense of self that is rooted in narcissism and apathy. They sweep in to jolt us awake from our drowsiness, our bitterness and our busyness. And then they — and you — lance our hearts with a love that supersedes any material wealth, pleasure or comforts we could possibly acquire.

Thank you for your hidden heroism, your constant love and your quiet virtue.

Jeannie Ewing the mighty.1-001

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why I’m ‘Out’ as a Person With Mental Illness

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Far and away, the most frequently asked question I receive as a writer with bipolar and anxiety is, “How did you get to a place where you could be this open about your struggles?”

It’s usually followed with a question like, “Aren’t you scared?”

I used to be terrified. Like many folks with a mental illness, one of the first things we’re told is to keep it to ourselves. At times, I existed in a cloud of shame that followed me around wherever I went.

But that’s just it – that’s exactly why I came out and became such a vocal advocate for my community. That shame is why I started talking about what I had been through. I was tired of feeling afraid, tired of feeling ashamed and tired of seeing the stories of my community being told by people who just didn’t get it.

I wanted to tell my own story and reach people like me who needed to know, without a doubt, they were not alone.

Yes, it’s scary to put yourself out there and tell the whole world – let alone family or friends – about what can be the darkest, most vulnerable part of our journeys. There are real risks involved, too, that people need to weigh when deciding who to tell about their illness(es) and when.

Our safety, our security, our housing and our jobs can all be at stake because mental illness, unfortunately, is a highly stigmatized status to hold in our society.

But when I weighed all of these risks, and I thought about my 14-year-old self who was contemplating suicide because he felt utterly alone, I knew I had an obligation to speak up. If I could help make someone’s burden a little bit lighter by being outspoken about my illnesses, the benefits far outweighed the risks.

I remembethe first place I looked for help as a teen was not a guidance counselor, not a parent or guardian, not a friend. Instead, I turned to Google. I searched for things like, “Help, I want to die” and “I’m depressed and I don’t know what to do.” I remember, vividly, scouring the search results, looking for some kind of affirmation or something to hold onto.

The reality is that the stigma around mental health keeps us so silent we’d rather ask Google what to do than ask our friends or family. We go it alone because we’re ashamed, we’re afraid, we’re confused, we’re overwhelmed and we think our experiences make us too much of a burden for others to deal with.

There was a time when Google knew more about my mental illnesses than my best friend did.

After spending too many years feeling isolated, disconnected and self-hating, I began to write about what I had been through. And with time, that writing ceased to be a private exercise and instead, became the beginnings of a blog. That blog, which came to be known as Let’s Queer Things Up!, helped bring into sharp focus all of the reasons why being out as someone with bipolar and anxiety was the right decision for me.

Why am I out?

Because I want to build community around mental illness, especially for those who, like myself, are transgender and also grapple with these illnesses.

Because too many times I’ve received emails that said, “You’re genderqueer and bipolar? I thought I was the only one.”

Because too many people think of folks with mental illness as anything but people – as criminals, or “psychos” or burdens on society rather than fully human and deserving of every bit of compassion, respect and dignity people should be afforded.

Because when you take away the rights of people with mental illnesses – when you vote against important legislation or elect a politician who wants to strip us of the resources and support that we need – I want you to remember my face and remember my words.

Because visibility matters. I want teens to grow up in a world where, when they’re searching for people who have lived through what they’re going through, they can find them.

Because a teenager sent me a letter that said, “I found you through Google. I’m trans and I have bipolar. I didn’t think I could be successful, but I look at everything you’re doing and you make me believe in something.”

Because I want to create a safe space for others to use their voices, too, so that together the collective vibration of our voices will be an undeniable force.

Because you cannot deny our personhood, our worth, our brilliance or our power when we work together.

Because teens would rather tell me they’re suicidal through my Tumblr ask box than pick up the phone and call a hotline or a friend.

Because an article I wrote asking people not to ridicule someone with a mental illness was read in over 180 countries by millions of people around the world.

Because it was an article I never should have had to write in the first place.

Because no one with a mental illness should ever feel alone.

Because there is enough shame surrounding mental illness that we have to even consider whether or not to “come out.”

Because we shouldn’t wait to have our stories told for us. They are ours to tell.

Telling the world that I have bipolar disorder (and later, anxiety) was not an easy choice to make. Friends and family expressed concern, asking me whether I was sure I wanted the word “bipolar” forever attached to my name for anyone in the world to see. Others told me it would be a career-ruining move that would haunt me for the rest of my professional life.

But in order for other people with mental illness to have a life – to have careers, to have a future – they first need to know, unequivocally, that they are not alone and that others now thrive with these same illnesses that threatened to pull them under.

When seeing is believing, visibility is everything. If living visibly means I give someone with a mental illness the chance to keep going, I will keep the word “bipolar” forever. I’ll proudly do the work I’m doing, even if it means a lousy potential employer puts my resume in the garbage.

There’s something poetic about the fact that Google was the first place I found people like me, and now I’m the person people are finding when they search for help. The tables really have turned.

Even on days I feel afraid and question my decision to go public with my disorders, I remember what it felt like to turn the Internet upside-down as a teen, looking for someone, anyone, who knew how I felt. If I can be that person for someone else — the link that opens up their world and keeps them going — it’s all been worth it.

Follow this journey on Let’s Queer Things Up.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

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When The Mighty Published an Article That Used the R-Word

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The following post was written by Hillary Savoie and Melanie Gomez, two Mighty contributors, in response to an article on The Mighty where the R-word was written out.

Hillary Savoie:

As the mother of a young child who is developmentally delayed, I have a visceral reaction when I see or hear the R-word. It makes me sad. It makes me angry. It makes me want to launch into a diatribe about why the words we use matter — and why, to me, the use of the R-word isn’t acceptable.

I do recognize that some people don’t completely understand the depths of why this word is offensive, but there are increasingly fewer and fewer reasons for a person to claim ignorance on this subject: Rosa’s Law was passed in 2010, beginning the striking of “mental retardation” as an acceptable medical term; the successful campaign Spread the Word to End the Word” has been educating the public about why the R-word is unacceptable; John Franklin Stephens, a Global Messenger from the Special Olympics who also has Down Syndrome, had a viral response to Ann Coulter’s repeated use of the term in 2012.

Despite this I still see the word glaring back at me from the New York State documents associated with my daughter’s yearly Medicaid waiver renewal. I see it in posts and comments on Facebook. I see it in the medical articles I read. I hear it yelled between kids in the grocery store. I hear it tossed casually back and forth between adults in the work place. 

I know to expect it in those places. Sometimes I speak up. And sometimes I let it slide, because sometimes it isn’t worth it.

However, there are places I don’t expect to see the word used carelessly. And The Mighty is one of those places.

So when I read this article on The Mighty, I found myself feeling quite shocked and, frankly, angered, because I felt the man in the article was defining himself and his disability at the expense of those he sees as “retarded.” And while I understood that he might have the right to counter assumptions made of him in the ways he sees fit, I felt it wasn’t fair for The Mighty to make the editorial decision to share them and, indirectly, condone them. 

So I mentioned it in our discussion group for regular Mighty contributors. And quite the discussion ensued. At first I was afraid that I, as I’ve been known to do, spoke up a wee bit, let’s say, passionately? Assertively? But then fellow regular contributor Melanie Gomez and I had what I felt was a truly sincere exchange that left each of us looking at the situation somewhat differently. 

It seemed like an important discussion to share, as it represents a thoughtful exchange on the subtle nuances of how language and self-definition are fluid and meaningful in different ways to different people…because where I saw offense, she saw hope:

Melanie Gomez: I love that the Mighty allows people with challenges to describe themselves – or in this case describe what people call them. The moment we judge this man for being inappropriate in how he communicates his feelings, is the moment we go astray of the purpose of this community. Disabilities often ARE politically incorrect. My son has agenesis of the corpus callosum as well. I was thrilled to see a man who has this condition be able to express himself so well!! My son’s medical diagnosis includes the words “severe mental retardation” so I believe that it is or was at some point a medical term. It’s now used in a derogatory manner, and I inferred from this article that’s what the author was alluding to. But even if not, I feel like The Mighty is where he should be safe and unjudged. I know you’re judging the word, and not him. But don’t know that he would make that distinction.

Hillary Savoie: I am SO happy you responded to this post. I felt really uncertain about posting it…but there was something about the article that made me very uncomfortable. I think these are exactly the kind of conversations that we all should be having around such things. Since my daughter is so young (and non-verbal) I struggle to speak up in ways that I think are appropriate *for* her–and, admittedly, I am not always going to be on the money so to speak. “Mentally retarded” has been struck federally as a medical term since 2010. So, for me, the only reason to use the R-word is when discussing the use of the term (like in this discussion). Some doctors still use it, unfortunately, and I understand that this man uses it to define what he thinks other people think of him, and what he doesn’t think he is. I do TOTALLY understand what you are saying, that it is wonderful that he can express himself. Wonderful that The Mighty helps share his story. But I do think there are ways to have editorial guidelines that are respectful of both his right to respect to express himself and also of the rights of others to not be subjected to offensive terminology (or defined hurtfully through what someone else is or isn’t). For instance I think that there is a way to appropriately use editorial rights to say they don’t publish things with that word because it can be offense and when it is used by someone within the community or to prove some kind of point they can substitute the “R-word” in order to not condone the language…

Melanie Gomez:  I agree the R-word could be a great substitute here. TheMighty has added editorially to a post of mine in the past to adjust for more recent data than I had, so perhaps that could’ve been done on this post. You bring up a good point. I must confess that the word itself isn’t offensive to me.  I’m from the previous era when it was used by doctors (my son is 15). I knew what the verb “to retard” actually meant when used in the sense of a delay (think flame-retardant pajamas). I’m only bothered when it is used as a derogatory word. You’ve opened my eyes to the other side a bit more. Thanks for the opportunity to discuss it <smile emoticon>.

Hillary Savoie: Thank you for discussing this so thoughtfully and openly. It means so much to me to be able to discuss these sorts of things…I know we all have our perspectives based on personal experiences. And this one just really stung me…I spent my pre-Esmé life studying communication and rhetoric in storytelling…which was oddly good preparation for talking about disability. Defining acceptable language within a varied community is difficult. Defining acceptable language within a community that has been traditionally mistreated is extremely difficult. I do think there are ways to keep the conversation going and evolving…and to make an effort to protect all people involved. I wrote something last year about my thoughts on the R-word, if you’d like to read it. But I’ll cut and paste the important (for our discussion) part here: “It shouldn’t matter whether the R-word is used around me or another mother of a child with a disability or only quietly in one’s home. Using it at all suggests that it is “ok” in certain circumstances, i.e. when no one is there to be offended. But it is fundamentally offensive no matter what the circumstances as it degrades and dehumanizes a group of people who are more likely than most to be mistreated, who are vulnerable, who have a history of being degraded and dehumanized.

“And what that means is that we all have to stand up against words like the R-word when we hear them–perhaps especially much if it doesn’t affect us directly because instead of the lesson being: “Don’t use this word, you never know who you might offend,” the lesson becomes, “You degrade and insult us all when you use words that degrade and insult others, period.”

Melanie Gomez:

Bearing the title “Defender of Another” often leads down an unfamiliar path. As moms of special kids, both Hillary and I share this unique position. I often feel as though I’m on a tightrope, holding my breath to neither go over to the side that infringes on others, nor to the side that would encroach upon my own child’s freedoms. I’ll admit that if I’m going to teeter, it won’t be on the latter side but the former.

Hillary reacted swiftly to the original article with the R-word because she felt compelled to defend her child.

I reacted swiftly when I saw her comment because I felt compelled to defend the author. I see extreme value in both sides.

When my baby was only a few months old, experts gave me this word. Neurologists and geneticists from a top children’s hospital handed me the word as a means to understand and explain the challenges my son would face. As defined by Webster, the word told me to expect “subaverage intellectual ability equivalent to or less than an IQ of 70 that is accompanied by significant deficits in abilities (as in communication or self-care) necessary for independent daily functioning, is present from birth or infancy, and is manifested especially by delayed or abnormal development, by learning difficulties, and by problems in social adjustment.” It’s not a pretty diagnosis.

Here’s why I think my response was so instinctual and perhaps why more of the older individuals affected by the same condition might not be as hot on the bandwagon to abolish the word as younger folks. When the R-word in all of its intents and purposes is rebuffed and disallowed to be uttered under any circumstance, there’s a small part of me that feels as though my son’s diagnosis is being discarded. His intellectual function has now been deemed politically incorrect. He’s being assigned a euphemism because his actual diagnosis is too awful to be spoken of. I’m not saying that is true — please understand I get it — I’m just explaining the initial response. 

Who is right? If the R-word, used in medical or institutional language does not offend me, does that mean it’s OK? If a man with an intellectual disability uses that word, is he exempt? By the end of my conversation with Hillary, I concluded that a word which my fellow sojourner finds reprehensible at all times, must then be unacceptable to me. I realize that she and her child are on my side of the tightrope; we’re not at odds, but by each other’s side. That’s what the Mighty community is all about.

Editor’s Note: In response to Hillary and Melanie’s discussion on our article, The Mighty decided that when the R-word is used on our site, we’ll add language to that post directing users to the Spread the Word to End the Word campaign. If we ever use language you’re uncomfortable with or offended by, please never hesitate to reach out to us at [email protected] or me personally at [email protected]
— Megan Griffo, Editor-in-Chief of The Mighty

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