Monday, June 18, 2018

The care crisis that should shake us all

By Louise Kinross

If you didn't see this CBC White Coat, Black Art town hall on the crisis facing youth with complex disabilities aging out of the services and funding they and their families depend on, it's well worth the listen. It's packed with firsthand stories from parents, a young adult with a disability and experts in children's rehab, education, mental health and law, a couple of whom have siblings with disabilities.

You know how I can tell it's the best thing I've heard on the topic? As a parent, I was shaken after listening to it, and I still am.

It was three years ago that I found myself writing to the deputy minister of Ontario's Ministry of Community and Social Services, our MPP, the ombudsman and all kinds of people within the bureaucracy. My own son was leaving school and we had no funding to support what he would do during the day.

We had registered with Developmental Services Ontario three years earlier, but the person who came out to do the four-hour assessment told us at the end of it that there was no money. The Ministry had frozen new money for Passport funding, which is the main way to access money for a support worker so that your child can volunteer or do a work program or fill their day with a passion. There were no government-funded programs available to us.

At a time when most parents are sending their children off to college, I needed to help my son carve out a good life, while I continued to work outside the home. 

Today, he does farm chores at Windreach Farm on Mondays and Fridays. Horses on Mondays, and chickens on Fridays. On Tuesdays and Wednesdays he cleans at Variety Village. On Thursday he goes to an arts program at L'Arche.

In the fall after my son graduated, after an extraordinary amount of advocacy, the likes of which I'd never needed in the children's system, we received a small amount of Passport funding, certainly nowhere near sufficient to cover our worker hours Monday to Friday.

Remember, I'm someone who's worked in the field since 1999. I have connections. If that was the best I could do, what happens to the parent who doesn't speak English, or isn't able to fit extreme advocacy into their day?

Over the next two years I fought to have that funding increased. This year it is at an adequate level, and for that I am very grateful. Actually, it's a mix of guilt and gratitude. I feel guilty that many families have not received this funding. I feel guilty for the numerous times I was told by government gatekeepers that other families had real problemstheir kids were homeless or the parents were dead. Because that's the way the system plays parents off each other. I can't count the number of times a government employee told me that unfortunately, in the adult system, we have to wait for someone to die to open up resources. 

But funding is always tenuous, especially with our new government. And we have no leads on supported housing for our son when we are no longer here.

So when I listened to Rose Canto, above with son Matthew, talk with Dr. Brian Goldman about not knowing how to fill his day when school ends at 21, I felt a familiar sense of panic. I felt wobbly. 

The degree to which this system brings parents to their knees can not be overstated.

Our children are valuable members of society and some of them require similar supports as adults. That many will instead sit at home all day, in front of the TV, with a parent, should shake us all.

Wednesday, June 13, 2018

Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler:
We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler:
Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler:
He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler:
We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler:
When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler:
We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler:
We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week
Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler:
They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler:
Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler:
As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler:
I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler:
Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.

This is a fabulous Upworthy video about the family.

Tuesday, June 12, 2018

Horrific conditions led to two preventable deaths

By Louise Kinross

Two stories about horrific, entirely preventable deaths of people with disabilities crossed my desk.

In one case, a British woman with Down syndrome died of sepsis—a blood infection—in 2015 because nurses at the home she lived in left a blocked catheter in her for months. Her name was Sandra Miller.

In the other, a 13-year-old Wisconsin girl with who was unable to walk, talk or care for herself, died of sepsis after her mother abandoned her for days during the Memorial Day weekend last year. She was found by police in a diaper weighing 1.25 pounds. She had a rare syndrome called Wolf-Hirschhorn and lived alone with her mother. Her name was Brianna Gussert. She is pictured above with her father Greg.

These were slow, painful, entirely unnecessary deaths. Let's give Sandra and Brianna a voice in death that they obviously didn't have while alive.

Monday, June 11, 2018

Sometimes life's a pain, for everyone

By Louise Kinross

In 2013, Swiss disability group Pro Infirmis created a powerful ad called Because who is perfect?

They invited people with a variety of disabilities, such as a curved spine or an amputated leg, to have their measurements taken, then made mannequins to replicate them. The mannequins were dressed in high-end clothes and put in store fronts on Zurich's main shopping street.

The same disability group just released a new ad above: Everyone is equal. No one is more equal.

In this ad, people with disabilities experience common, everyday frustrations, like a vending machine that keeps spitting out change, which have nothing to do with disability. The spot was created by agency Thjnk Zurich and directed by American Jon Barber.

What do you think?  

Friday, June 8, 2018

A mom discovers what the doctors missed

By Louise Kinross

Many of you know Brenda Agnew, the powerhouse behind the Parent Advocacy Link (PAL) Facebook group that connects over 1,500 parents of children with disabilities to share practical and emotional support. You may not know that Brenda’s son Maclain, 10, has disabilities that stemmed as a newborn from untreated jaundice, a condition that happens when too much of a chemical called bilirubin builds up in the blood, causing the skin and eye whites to look yellow. Left untreated,
 Maclain's jaundice caused kernicterus, a type of preventable brain damage.

Maclain was diagnosed with cerebral palsy at age one, but Brenda felt that something didn’t add up. She read Maclain’s medical records, asked questions, searched on Google and got a neurologist to look at an earlier MRI. Her suspicions that he had kernicterus were confirmed before Maclain was two. Without her investigative work, the true cause of Maclain’s disabilities would be unknown.

What happens to a parent who learns that their child’s disabilities were preventable? What happens when a mother thinks her child received the best neonatal care, only to learn that a common condition that’s entirely treatable was ignored? BLOOM spoke to Brenda about the unique emotional path of parents whose children were harmed due to medical negligence.

BLOOM: Can you tell us a bit about Maclain?

Brenda Agnew:
He’s going to be 11 in August. His physical disabilities are significant. He needs help with all daily living and self-help skills. Cognitively he’s very bright and aware, but he’s very impacted physically. He’s deaf, but he has a cochlear implants, which have given him the gift of hearing. They're wonderful, until they fall off his head and he needs someone to put them on.

BLOOM: I remember that earlier you didn’t think he was going to speak.

Brenda Agnew:
We were told he wouldn’t be verbal because his tone is so low in his body. He speaks very quickly or he laughs when he talks—with Maclain that happens often—so it’s difficult to understand, but when he takes his time and for those who know him, he’s very well spoken. That’s not always the case for kids with kernicterus.

BLOOM: What is Maclain like as a kid?

Brenda Agnew:
Maclain is a typical 10-year old who wants to knock on doors of the kids down the street, go to birthday parties and after-school barbecues, and get an iPhone. He wants to get married and already has two crushes on girls at school. He’s engaging, social, kind, friendly and accepting. He’s a wonderful soul.

BLOOM: Maclain and his twin Braden were born at 29 weeks.

Brenda Agnew:
His twin brother died in utero about 24 to 36 hours before they were born. They were delivered at the local hospital and Maclain was transferred to a level 3 neonatal intensive care unit.

BLOOM: When did the signs of jaundice appear?

Brenda Agnew:
It was around day three. You look for that yellow tinge, but there was so much going on, with so many wires. His blood work was indicative of jaundice, because he had high levels of bilirubin in his blood and a couple of other clinical symptoms. He got irritable and lethargic. Then, as the jaundice progressed, you could absolutely see the signs of toxicity: he arched his back, he had high-pitched screams, a low-grade fever and there was posturing of his limbs. At first they suspected seizures, and then an infection, but nothing came back from the lab to indicate that. They said they thought it was a delayed neurological response to the trauma suffered from the demise of his twin brother and it would take a few days.

BLOOM: So they never brought up the possibility of jaundice?

Brenda Agnew:
No. After I got his records I realized they’d tracked jaundice in his chart. There were nursing flow sheets with quite a few references to ‘baby looks jaundiced’ and someone had written phototherapy, which is the treatment, with a question mark. But they didn’t say a word about it and phototherapy wasn’t ordered.

They thought he had an infection but nothing was coming back to prove that. They didn’t have any answers. Later, we found out that not only were they using a protocol for jaundice that was outdated, but the guidelines were for healthy, full-term infants, and Maclain was neither.

BLOOM: So when did you first realize that Maclain had been harmed?

Brenda Agnew:
I remember him being discharged from the NICU with no red flags or indications that anything was wrong. I had an older son who met his milestones early, and I knew Maclain was not there, but he’d had a really difficult start. He came home in October and in December we got the confirmation that he was profoundly deaf and they said he had what they called auditory neuropathy. I Googled that and it kept coming up in references to kernicterus. Well, that’s not possible, I thought. He’s never had jaundice. He went in at eight months old corrected to have an MRI for consideration for cochlear implants, and they found something consistent with kernicterus. I asked our pediatrician and he said ‘No, Brenda, he was never treated for jaundice.’ And I said ‘But does that mean he didn’t have jaundice?’

I was always told that his cerebral palsy was probably a result of neurotoxicity caused by the loss of his twin in utero. And I was beating myself up at the time about that. But something didn’t fit. So I went to our neurologist and said can you look at this MRI? And he said it’s consistent with kernicterus, and that Maclain was also presenting in ways that suggested kernicterus.

I remember the day I went to our mail box and got the letter that said it’s not this, and it’s not that, and that our best estimate, based on the evidence, is that it’s most consistent with kernicterus. I ran in the house balling to my husband Graham, because for two years I’d been blamed for this inadvertently—that it was because his brother died in utero, and I didn’t get to the hospital fast enough.

BLOOM: But how would you have known to get to the hospital?

Brenda Agnew:
I had an ultrasound on Monday and my twins were perfect. On Wednesday, one twin passed away, but I could still feel movement because Maclain was kicking intermittently. When I went to the hospital on Thursday, because I noticed less movement, the doctor said ‘Why didn’t you get here sooner?’ I said ‘I’m sorry, I have a 19-month-old at home with a broken arm, and I’m working full-time and I could still feel kicking.’ Until we got the diagnosis for kernicterus, I blamed myself that if I had gotten to the hospital 12 hours earlier, maybe Maclain’s damage would have been minimized.

BLOOM: How did you respond when you got the letter?

Brenda Agnew:
I thought are you kidding me? I come through surviving the death of a child, I have a son who spends three months in NICU, and now you’re telling me this could have been 100 per cent preventable if he got phototherapy? Phototherapy is a common practice. It’s cheap and effective and has no contraindications. This is not okay. I need to know what happened, why he wasn’t treated and what transpired. I had already gone to the hospital and pulled all of his records so I had a good picture of what happened. Then I began a conversation with a law firm.

BLOOM: I understand you learned that the hospital was operating under guidelines for treating jaundice from a 1985-86 handbook, with a couple of updates in the 1990s, that related to full-term well babies, not unwell, premature babies. So Maclain, in 2007, didn’t meet the bilirubin threshold for phototherapy.

Brenda Agnew:
He was 1,550 grams and the old phototherapy guidelines would have treated him with phototherapy if he was 1,500 grams. That’s the difference of 10 nickels. But even the old guidelines had a second page that suggested thresholds be lowered if the baby was exhibiting clinical symptoms of jaundice. Maclain was showing all of the signs.

BLOOM: I understand the hospital only updated their guidelines in 2010, because you brought a lawsuit.

Brenda Agnew:
Yes. I know of another family whose child had untreated jaundice there at around the same time, which led to kernicterus. But they were reluctant to file a law suit because they didn’t want to give up the relationships they had with the doctors at the hospital.

BLOOM: But from what I understand, those guidelines wouldn’t have changed three years later without your lawsuit.

Brenda Agnew:
It’s still to this day, it’s hard for me to read what happened. I’m going to get emotional now. If you look at the way phototherapy works, if it’s applied on the first day, it breaks up the bilirubin and gets it out of the system, preventing anything from happening. On the second day, it can reverse some of the neurotoxicity. If they don’t get to it till the third day, the damage is irreversible. When you look at the timeline they had, Maclain could have been a typical kid today, if his jaundice was treated.

BLOOM: How do you cope with that?

Brenda Agnew:
Our legal settlement was important. Did I get an apology from the doctor? No, I didn’t. I did get an apology from the hospital, through their lawyer. I felt satisfaction when they changed the guidelines because I was confident and hopeful that this wouldn’t happen to another family. That was extremely valuable to me. The other thing the settlement helped with was it gave us a big peace of mind, knowing that Maclain would have care for the rest of his life.

I felt a bit vindicated, that in all of this I was right. It doesn’t reverse what happened, but it made me feel like I did the best I could for my son, given the situation.

The other piece is what I do to help other families. That makes me feel better. Whether it’s PAL, or being involved with CP-Net, or speaking out and telling my story, that’s the stuff I use to cope.

BLOOM: What was your role with PAL?

Brenda Agnew:
I created PAL to bring peer support for families. I’ve had battles with depression and anxiety and I left work for a reason. The nice thing about PAL was that I could do it on a volunteer basis, as I was feeling well. I did it because it was important, but it was also self-serving, because it made me really happy.

BLOOM: Was your depression related specifically to what happened to Maclain?

Brenda Agnew:
Yes. It was identified as being kind of like a post-traumatic diagnosis. It was described as being a depression and anxiety that result from something so beyond your control, that there’s no resolution or closure to it. Somebody did this. Somebody could have stopped this from happening and they didn’t, and that’s a hard one to get over mentally.

BLOOM: As you’re talking, this reminds me of some mothers whose older children had brain injury as a result of severe illness or injury. In these cases, the parents took the child to emergency and the doctor told them the child was okay, and to take them home. The parents were beside themselves—because they knew something was seriously wrong. But they couldn’t convince the medical staff.  So they took their kid home, and then the child deteriorated and was re-hospitalized and diagnosed with a brain injury. Then they felt guilty that the brain injury wasn’t identified earlier. They felt betrayed.

Brenda Agnew:
Something that came out of our experience was that I couldn’t trust the medical profession. I could not in my heart trust anybody, and I knew that compromised a lot of relationships. I couldn’t believe someone would do the right thing medically, because they had let Maclain down. I didn’t know Maclain had jaundice as a newborn, but as a Mama bear, I knew something wasn’t right. I remember being hysterical at the bedside, and saying this is not okay. I understand where those moms are coming from. It’s like watching your child drown and not being able to go in and help them.

BLOOM: Is there a support group that is specifically for parents of children whose disabilities were preventable?

Brenda Agnew:
Not that I know of. I do belong to a U.S.-based group for kernicterus, but I’ve only met a handful of moms and it’s been through telling my story. I’ve had people approach me.

BLOOM: Is it helpful to connect with those parents?

Brenda Agnew:
It was helpful, but you get mad all over again. To be honest, I don’t want to meet anyone else, because it breaks my heart to know this is still happening.

BLOOM: I think when something is preventable, it’s a very unique situation. It’s different emotionally.

Brenda Agnew:
Yes. This wasn’t a legitimate mistake. There are babies who are born at 23 or 24 weeks who have many different interventions. Sometimes an intervention will have a negative consequence, but you’re in survival mode so you move forward. That’s very different from a blatant disregard of clinical symptoms and outdated protocols.

BLOOM: How would you advise a parent whose child’s disabilities were preventable from getting stuck in the injustice of it?

Brenda Agnew:
I always encourage parents that if they have something in the back of their mind, that they believe in their heart that something happened that wasn’t right, to contact a lawyer they trust to ask the question. They have the expertise to pull the records and bring in an expert who can say definitively whether this was a negligent act, or it wasn’t. For some parents who learn treatment didn’t breach the standard of care, that can help them turn the page. Okay, I needed to know that, thank you.

I always advise people to go to patient relations at the hospital and have an investigation opened, and to perhaps consider filing a complaint with the College of Physicians and Surgeons.

You need to right this wrong. It doesn’t have to be a lawsuit. You need to amend the way something is done so it doesn’t happen to another family.

BLOOM: I guess I’m thinking more if a parent is stuck emotionally. They may have followed up so that people are accountable, but they can’t get past the fact it happened to their kid.

Brenda Agnew:
That’s where the therapy piece comes in. You need to go through the feelings and emotions you’re having. When we settled our case I thought ‘Wow, okay, my mental health will be good, and I’m going to be great.' Then I had more anxiety and panic attacks in the six months after we settled than I did prior.

I think I thought in my mind this will fix everything. I thought after eight years of fighting, it will be done. But it doesn’t leave you with a resolution. You still have a child with special needs. When I realized it wouldn’t fix everything, I had to fall back on my coping skills: my psychiatrist, my essential oils, and reading.

BLOOM: How do you use the essential oils?

Brenda Agnew:
I always have lavender and peppermint with me. They help to calm me. And I read great books, the bestsellers. That’s my escape. I started to read before bed or in the morning with my cup of tea. I also got back to walking. I’ll go for an 8 kilometer walk and I’ll talk or vent the whole way.

BLOOM: Do you walk with friends or family?

Brenda Agnew:
Sometimes by myself or with friends or my husband. I did yoga for a period. Now I’m carving out five minutes a day, which is big for me, to do breathing techniques and mindfulness. When I’m stressed out, I recite all of the U.S. states in order alphabetically. I also love my red wine and Netflix and barbecue chips.

The other thing I do is volunteer. It’s like my exercise.

BLOOM: What kind of volunteering?

Brenda Agnew:
Wherever I think I have the capacity to help. I’ve volunteered at my boys’ schools and with our local hockey association. I’m the chair of our special education advisory committee (SEAC) board and I’m on the Burlington Accessibility Advisory Committee. I do a lot of work with CP-Net and CHILD BRIGHT.

BLOOM: And now you are working as a client liaison at Gluckstein, which is the law firm that handled Maclain’s case.

Brenda Agnew:
I remember having a conversation with my firm and saying ‘Guys, you need someone on your team that can help families through the process.’ I’m there to talk to someone if they’re questioning what happened to their child, but are afraid to ask a lawyer. I understand the emotions they go through and can help them understand terminology. And I provide resources.

BLOOM: Like the compassion fatigue day where parents listened to speakers?

Brenda Agnew:
Yes. I also find other ways to engage Gluckstein in the special needs community. For example, we now support the respite program called rEcess and Ability Online.

BLOOM: What is it like to be back at work?

Brenda Agnew:
I love it. I married everything together: the special needs population of which I’m a member, and the legal aspect which was a huge part of my life for eight years, and which evoked change, and I love being an advocate. I love helping people to find their voice.

BLOOM: So even though you said earlier that you still struggle with what happened, you sound like you’ve reached a really good place in your life.

Brenda Agnew:
I think I’ve probably been more my true self in the last year than I have been since Maclain was born. I still manage my depression and anxiety. Time does have its effect. I did what I had to do to get what my son needed, I took someone to task, and a hospital protocol has changed. That lets me walk around with a little less on my shoulders.

BLOOM: It bothers me to think that there may be other parents who will never know that their child has kernicterus, and that it caused their cerebral palsy.

Brenda Agnew:
In one of my fits of rage I’ve said I can’t believe in my heart that we are the only family with a child that had jaundice that wasn’t treated and walked away with a CP diagnosis. I have heard from other families in Ontario whose children have kernicterus, or suspected kernicterus.

Friday, June 1, 2018

A nurse's stories reveal the heart of medicine

By Louise Kinross

I just finished The Language of Kindness: A Nurse's Stories of Life, Death and Hope and I can't get the images of author Christie Watson's British patients out of my head.

There is Betty, a frail old woman lying on a hospital stretcher with chest pains, following the recent death of her husband. After getting her a sandwich and a cup of tea, Christie holds her "paper-thin hand," closes her eyes and listens to her talk about her youth, till Christie is watching "a young woman in a dress made of parachute silk dancing with her new husband..."

There is the 14-year-old boy with cystic fibrosis that Christie readies for a new set of lungs. She wets his lips with a sponge in sterile water, and takes his Game Boy, swearing "to guard it with my life." When the porter comes to take him to the operating room, he turns to ask if she'll be with him. "The whole time," she tells him. "I'll be there."

There is Jasmine, the 12-year-old girl on a ventilator and dying, after a house fire. Her brother is nearby, also on a ventilator. Their mother has died. When an aunt arrives, the doctor explains the severity of Jasmine's injury and that they need to "let nature take its course."

The aunt doesn't understand. "Let nature take its course?" she asks Christie, confused.

"She is dying," Christie says.

"Jasmine's aunt is too shocked to hear a narrative," she explains to the reader. "She needs blunt, quick information to break through the shock."

Then, before bringing the aunt in to see her niece, Christie and another nurse tenderly wash the girl's hair, to remove the overpowering smell of smoke. "Smelling the lingering smoke will surely make it worse for Jasmine's aunt," she writes. "Sometimes, not making it worse, is all we can do."

There are nurses who work a night-shift, then travel two hours to the funeral of Samuel, a premature baby they've cared for. They've been up for 21 hours, Christie notes.

One of the nurses, Christie writes, has been at Samuel's bedside round the clock for months, singing to him, holding his hand and stroking his hair. Christie recalls watching her pull a container of bubbles from her pocket, then blow them gently above Samuel, popping them one by one, as he kicked his legs.

Christie writes largely in the present tense. In her poetic and philosophical bookwhich weaves in history, science, architecture and social commentaryshe brings the hospital alive with vivid descriptions of the sights, sounds, and smells of each unit, and the complex characters who are her patients, their families and her co-workers. "Nursing is a career that demands chunks of your soul on a daily basis," she writes.

This book shows clearly why nurses, who spend the most time with patients, are in a unique position to provide not just physical and medical care, but emotional support, in a flexible, non-judgmental way that honours a patient's story and helps them feel heard and understood.

I listened to this as an audio book that Christie reads, and it was captivating.

Monday, May 28, 2018

The film 'Deej' upends what you think you know about disability

By Louise Kinross

David James Savarese, known as DJ or Deej, has autism and doesn't speak. As a young child, he was placed in foster care. He was abused there, but couldn't tell anyone. Only after he was adopted by parents who taught him to read and write was he able to share his story, which is the focus of the film Deej, making
 its Canadian debut this Friday at Toronto's ReelAbilities Film Festival.

"Imagine for a minute," DJ says with a voice device in the film, " are removed from your home for reasons no one bothers to tell you because you can't speak, so they assume you can't hear or think or feel." And later: "To this day, I question my humanness." The film follows DJ through a regular high school and into college, revealing a rich world that he expresses in poetry and as a playwright.

BLOOM: Why did you want to make this film? 

DJ Savarese:
I wanted to show the people who said I was incompetent, that I’m not. I wanted to show people that they make wrong assumptions based on people’s appearances all the time. I wanted to show neurodiverse kids that they are needed and worthy of being celebrated.

BLOOM: What technology and support people do you use to communicate?

DJ Savarese:
I can use almost any means to communicate: photos, AAC, manual sign language, writing, typing, and even my vocal cords. Because I still intermittently dissociate and lose track of my body, I travel with a support assistant whose physical resistance to my movement makes it easier to locate my hand—and body—in space.

BLOOM: At one point in the film you say 'no assistive device can do' what your mom does. What do you mean?

DJ Savarese:
I mean that no assistive device can fill in when a paid support person is sick, or late, or quits, and all I need to do is look at her to remember I deserve respect, and I can handle it myself. 

BLOOM: Just to clarify, is the value of the support person (in addition to providing physical resistance) that he or she is a constant reminder that you're worthy of respect? Is it about the power of seeing yourself through the eyes of people who know you?

DJ Savarese: Yes and yes! I love your notion of seeing myself reflected in the eyes of those who 'get' me—yes.

BLOOM: We learn you suffered severe emotional trauma as a young child in foster care. You say that because you don’t speak, people 'assume you can’t hear or think or feel.' Why is speech associated with being human?

DJ Savarese:
 I’m not sure. You’d have to ask a neurotypical [person] that question, I think. Maybe it’s because developmental tests make speech a gatekeeping skill that keeps some kids from ever getting the chance to be taught to read and write.

BLOOM: You talk about a mission to “free your people.” Does this refer to non-speaking autistics, or all non-speaking people, or all people with disabilities?

DJ Savarese: 
I want the film to speak for all nonspeaking people, and I tell my story so kids with trauma and kids in foster care can see life gets better.

It might refer to any of those people, but it also refers to any of us who are not allowed to lead the life we want for ourselves because we are pigeonholed by society.

BLOOM: Your film touched me deeply, because I have a young adult son who doesn’t speak (he doesn’t have autism, but a rare disorder). He is able to read, but he’s never developed a fluid form of communication so he can freely express his thoughts. What can we do to empower people like my son?

DJ Savarese: 
Keep working with him to increase his fluid communication and explore a variety of ways to communicate. There are examples on Listen2Us of how to move someone who uses single words to sentences and from sentences to paragraphs.

I’m sure no one stops learning as a young adult.

BLOOM: What advice would you give to parents of a child who can’t speak, especially if they have an intellectual disability?

DJ Savarese:
Visit my website at Listen2Us, and keep visiting it all summer as I finish it.

Ask yourself how you can possibly know your child has an intellectual disability if you aren’t able to understand what they know.

Try all kinds of communication with them: photographs, words, AAC, sign language.

Read to them a lot and ask them questions using answer banks. New ideas keep us from getting locked in our old ones. 

BLOOM: Do you think we can learn from people who have intellectual disabilities? Is there value to all kinds of neurodiversity?

DJ Savarese:
There is value in every person, but I reject the term "intellectually disabled." It's a figment of the ableist's limited—and limiting—imagination.

BLOOM: How does writing poetry help you deal with memories of your childhood abuse?

DJ Savarese:
It’s hard to put into words. It just does. If I can write a poem and strike a nerve in my reader, then I might still be sanely sad, but at least I’m safe and not alone.

BLOOM: Who paints the images that accompany your poetry in the film?

DJ Savarese
: Em Cooper made the film awesome by offering an alternative to the camera’s outsider’s gawking stare. We collaborated online every week for months.

Here is her biography from the movie’s website:

Em Cooper is a British animation director specializing in combining oil-painted animation with live-action film. Her "striking, impressionistic animation" received critical acclaim across the British press in 2013 with the release of Kiss The Water (dir Eric Steel, BBC Scotland) for “gorgeous animation sequences in Munch-like swirls of colour” (The Observer/The Financial Times). In 2014-15 she created animation for Amazon Prime’s Emmy nominated children’s series Gortimer Gibbon’s Life on Normal Street. Em is a graduate of the Royal College of Art, Sundance Alumna and a winner of both the YCN Professional Award for Animation and the Gradiva Award for Film.

And here is the two of us discussing our collaboration of poetry and oil-paint animation.

BLOOM: Are you still studying creative writing at Oberlin College?

DJ Savarese:
I am no longer at Oberlin College, but I am still a writer.

I graduated Phi Beta Kappa from Oberlin College in May 2017 with a double major in Anthropology and Creative Writing. An Autistic Self Advocacy Network (ASAN) Scholar Fellow, I was also the recipient of Oberlin’s William Battrick Poetry Fellowship and their Comfort Starr Award for meritorious scholarly work in Anthropology. My poems and prose have appeared in The Iowa Review, Seneca Review, Prospect, Disability Studies Quarterly, StoneCanoe,, Voices for Diversity and Social Justice: A Literary Education Anthology, and A Doorknob for the Eye (Unrestricted Press). Links to my published work can be found on my website.

BLOOM: What did you learn about yourself at college?

DJ Savarese:
I got an amazing education and stayed in my body for long periods of time.

I can teach and I love to teach.

I am synesthetic.

I care what happens to our planet, and its story is in flux all the time.

I assessed myself as able to write myself into a job, which I did.

I’m an artist, but my words are not like yours.

I’m interdependent, I’m not dependent; and people are safe if they’re interdependent.

I assessed myself as smart and made it so.

I love myself as I am.

BLOOM: Something we see in the film is how exhausting it is for you to control your body to fit in with social norms. After you’d been at Oberlin for a while, did you ever feel like you could let your guard down and be freer with your movements?

DJ Savarese:
I loved Oberlin a lot, and, yes, once enough people knew who I was and told all of their friends and colleagues, I could move more freely around campus and the town.

BLOOM: Is acceptance an important idea for disabled people—meaning acceptance of their differences and not always working to “fix” or “camouflage” them?

DJ Savarese:
I strive not only for acceptance but for appreciation and for need. I’m essential to the people in my life.

BLOOM: You talk about being exposed to gawking strangers. How do you deal with that?

DJ Savarese:
I’m not as vulnerable to their stares as I was, but if I’m in my head, it can be sad to see myself in their eyes. I live down to their low expectations then.

But if I’m in my body, I can ask my assistant to talk loudly about my accomplishments and introduce them [the strangers] to a new perspective.

BLOOM: How many of your supports were covered financially by the government—or by Oberlin—and how many did your parents need to pay for privately? For example, I’m thinking of the assistant you had at night.

DJ Savarese:
I received assistance from Iowa VR for 58 hours of support assistance for homework and a partial tuition stipend and book stipend from Ohio VR, and Oberlin paid for my support assistant during class time. I also received 35 hours per week of personal care assistance. In exchange for my support from Vocational Rehabilitation (VR), I was required to apply for 3 scholarships annually, which I did and received extra assistance with tuition and room and board that way. While I was on the waiting list for the home-based waiver, I never actually made it above #500; in fact, my position on the waiting list worsened over time.

BLOOM: You note that your mom lived in the town so she could help manage your support team. But you say that 'being included is every kids’ right, it shouldn’t be a lottery.' You obviously hit the jackpot when you were adopted by your loving parents. Did your dad teach disability studies before he adopted you? Or did he go into that after?

DJ Savarese:
My dad went into disability studies after he met me but before he adopted me. I think he was in graduate school for English when we first met.

BLOOM: What was it like to watch the film for the first time?

DJ Savarese:
I’m not sure if I can say this; I’ve seen it a lot, so it’s hard to remember what it felt like to watch it for the first time. It’s not easy watching yourself on screen. I’m greeting fear most of the time.

BLOOM: What do you hope to do when you graduate?

DJ Savarese:
As I mentioned above, I graduated in May 2017. I’m currently working full-time as an Open Society Foundations (OSF)/Human Rights Initiative Youth Fellow. I also just completed Harvard's Kennedy School course on Leadership, Organizing, and Action. I’m working to make literacy-based education, communication, and inclusive lives a reality for all nonspeaking people.

Here’s a link to an online interview with OSF:

I’ll likely get a PhD, but I’m taking time to see what life is like outside of academia, and it’s been a lot of fun so far.

BLOOM: In high school in the film, you talked about writing a book. Are you working on one?

DJ Savarese:
I haven’t written a poetry book, but my chapbook, a small paperback book, is A Doorknob for the Eye.

I’ve written my honours theses for Creative Writing and for Anthropology, but neither of them has been published. At some point I hope to publish a lot more. My website has links to most of my published work thus far. I hope to get more writing done this summer, when I take a break from travelling with the film for a while. I love writing, but it’s difficult to fit it in with two full-time jobs.

BLOOM: Can people follow you on social media?

DJ Savarese:
I appreciate you asking. I’m not made for social media, but here are some ways you can follow my work: