Grief Literacy and Developmental Disability

By Carrie Batt, Grief Educator

Grief literacy has become a popular topic, yet it is a topic that is untapped within the disability community, specifically within the developmental sector. The sector supports and empowers people with a developmental disability and consists of families, their loved ones and service providers.

Within the sector there are very few conversations, education, or shared expertise about grief, loss, and disability. The pandemic brought to light the sheer lack of education and support that exists about grief, loss, and disability. My way of dealing with such a realization was to try to make a small change, which began by forwarding a proposal to my employer, requesting that we offer grief literacy sessions. The proposal was accepted, and we successfully offered four 1-hour grief literacy sessions, which reached a total of 20 participants. What we learned in offering these sessions was the value of learning new language to help in expressing and describing their grief experiences as, often, people with a developmental disability have grief stories that so often are unacknowledged and go unnoticed. Their grief histories are often extensive, and very painful. The painful history of the grief experienced amongst people with a developmental disability that begins with the atrocities of the institutions, the Huronia Regional Centre, The Ontario Hospital School, and The Orillia Asylum. The magnitude of such grief and loss has only recently been made public.

There is such an enormous amount of grief and the loss that until recently was unnoticed. Such unacknowledged grief within the developmental sector is far more common than ever imagined, especially when we include that of our direct support workers. Currently their grief is unheard of. Consider for a moment, supporting someone for ten years in their home, and when the supported person dies, cleaning out their room to prepare it for the next person to move in, and doing so without any recognition of your personal grief. Such scenarios play out daily within our developmental sector and just being expected to carry on with the work is the norm.

With that said, the reality remains that the developmental services sector can only benefit from receiving support and guidance from the bereavement support services sector. Such a partnership would help to bridge the gaps and begin dedicating resources towards, training education, and understanding about grief, loss and disability.

a rocky beach with a small, greet prout popping through the rocks. You can see the gentle waves of the lake in the background of the image.

When Death Feels like a Thief

By Amanda Sebastian-Carrier.

Amanda Sebastian-Carrier is a communications professional who writes about her grief journey as a form of healing.

Thief!

Oh, how loudly I’d yell the words, shaking my fist at its back as it ran from me through the crowded bazaar. You would find me, soaked in tears, panting and crying and trying to explain that something very precious had been taken from me by that, that, THAT THIEF!

In the heart of my grief, at my frailest, all I could see was what was no more. I grieved all that was stolen from me by death; love, security and even my very self. Had I known the value of having every pocket of who I was, picked bare by grief, I would not have fought so hard to hold onto it all. I’d have let that cutpurse have it all without raising an alarm. That egg, it could take the golden globs of joy, the silvery wisps of laughter and the precious stones of delight that once filled my world and sell them all to the highest bidder. How could I have seen the faceless bidder, behind their paddle, was me. Grief, that panderer, was only taking from me what I could not currently carry and would sell it back, piece by piece, as the currency of healing was paid.

If only I’d had a clue that the larceny committed by grief was not the crime I was reporting, I’d have stopped much earlier. Before death, I had no idea that the theft of all you knew and love and the process of reclaiming your sense of security and self were a process that had the ability to change your life forever, but not how you might think. Grief and mourning can lead to healing if you do the work. If you don’t waste time filing reports to the universe about the misappropriation of your loved one. If you immerse yourself in the process of mourning, instead of decrying the looting of your life. If you truly, honestly, and mindfully, say goodbye instead of trying to hold on. If you can do all that, the only thing that grief is able to steal is your pain. You just have to be willing to give it up, let it be taken.

It’s only now, after I have made my peace with the plundering pirates of grief that I can see what I saw as theft, was actually a gift. The thief that is grief was not stealing all that was happy and good in my life, it was stealing my pain. Grief sat on me, taking all the things I didn’t know how to process, and filtered them through different lenses. It sat with me, taking from me each tear that fell, each shaky breath and each battered heartbeat. Grief took all I had, each story, each memory, and each emotion from me until I began to have room to process life again. Grief took, not a life in the way death had, but death; out of the way of life. Death stole life and grief; grief gave it back.

a close-up photo containing yellow roses on a dark background.

What Does Grief Support Look Like?

Post by Maureen Pollard, MSW, RSW

When we experience significant, on-going symptoms of grief that interfere with our adjustment to the reality of our loss, it can be time to seek professional help. It can be difficult to know where to find help and what grief support options are available.

Begin by asking for a referral. Maybe your family or friends have received good grief support they would recommend. Your doctor can typically provide a referral or you can conduct an internet search. When you find a grief support program on the internet, take time to examine the website thoroughly then connect by email or telephone to ask any questions you have before deciding which support might be the best fit for you.

Types of Grief Support:

Individual counselling with a therapist. A professional who has experience and knowledge in the area of dying, death and grief will listen to your story without judgment and then co-create a plan for healing that feels comfortable for you. The time you spend in counselling should be dedicated to your grief, with a focus on helping you find your way through your experience using information, insights and skill of the therapist to help you through the complex feelings and tasks.

Group therapy. This type of support may be led by a professional, or may be offered by peers who have experienced a similar loss. Groups can offer a rich support experience that lets you know you are not alone, and offers you the opportunity to learn from several others living with a similar loss. The time you spend in group will be shared and with a focus on topics relevant to the group’s purpose rather than any one group member’s situation. It’s important to learn about how the group works and what types of activities you’ll experience as you decide whether to try attending a group. If the group is run by peers, ask what type of training and support they received to ensure they’re delivering quality care.

On-line forums. There are many groups and forums focused on grief education and support on the internet. These are easy to access and allow you to participate at your own comfort level, either by simply reading posts or actively sharing your own situation, seeking support and offering support to others. A forum can create a sense of community among its membership, providing a great source of information and support from others who have a similar experience of loss who share what they have learned. In public internet forums there is always a risk of interference by people who post to cause trouble, but private, members-only, moderated forums can significantly reduce this risk.

Remember, whatever type of grief support you try beyond family and friends, don’t be afraid to quit if the style or structure of the support doesn’t feel comfortable or helpful. If you’re still experiencing the symptoms that led to your decision to seek additional help, please don’t stop trying to find the kind of support that can meet your needs. There are many different types of counsellors, groups and forums and it can take some time to find the one that’s right for you. Your healing is worth it!

a lilac is stuck in the sand of the beach at a memorial.

What I know about grief

Post by Alyssa Warmland, artist, activist, well-practiced griever.

I earned my “grief card” at 15, when I lost my mother. Since then, I’ve experienced other instances of loss and have become a well-practiced griever. Most recently, I lost a friend in a tragic way. She was deeply connected within our rural Ontario community and as I grieve her loss, I’m watching many other people around me grieve. Some, like me, are experienced in grief. Others are newer to the experience.

The following are some things I know to be true about grief for me, based on my lived experience. Some of them may resonate with you as well. Grief is unique to the people experiencing it in each moment, so please take whatever makes sense to you from this share and leave whatever doesn’t.

– Give yourself space to just feel the waves. Sometimes it feels like it’s not quite so intense, and then sometimes it feels like you’ve just been punched in the stomach. And it’ll cycle around. And it won’t feel this way forever.

– You’re totally allowed to feel whatever it is you’re feeling. Last night, while I spoke with sobbing friends on the phone, I was absolutely furious. Today, it’s that gut-punch feeling. it’ll cycle around. And it won’t be this way forever.

– Sharing stories can be helpful. Celebrate the reasons you loved whoever you’re grieving. Look at the pictures. Watch the videos. Sing the songs.

– Be patient with yourself, but keep going through the motions of what you know you need to do to maintain your wellness while you grieve. Eat something, even if you’re not hungry. Sleep or lay down, even if you feel like you’ll never fall asleep (podcasts can help make it less overwhelming). Drink water. Go for a walk outside. Write about it. Work, if you want to work (and plan for some extensions on stuff if you can, so you can work a bit more slowly than usual if you need to)

– Your brain may take a little longer to process things. Your memory may not work as well. You may feel irritable or overwhelmed. It’s okay.

– If the death part itself was hard, try to avoid focusing on the end, and instead think about the person you loved and who they were when they were well.

– Connect with other people who are grieving, it may be easier to know you’re not alone.

To learn more about collective grief, please read Maureen’s post on the topic.

Creative Outlets for Grief

Post by Maureen Pollard, MSW, RSW

Creative Outlets for Grief

In the depth of raw, deep grief it can be hard to find words to express your feelings. Perhaps you are not much of a talker, anyway. Maybe this terrible tragedy has left you speechless. There may be no words for the terrible experience you find yourself caught up in.

In times like this, expressive arts can provide a way for the feelings to flow. Such a release of feelings can ease the pain a little, as you put move some of the painful emotions gripping your heart out into the world. Making art can help shift the emotional burden you’re carrying, making it more manageable. Your creative pieces can help people understand what you feel like.

Music

Sing your sorrows out by making up lyrics to a familiar tune that brings you comfort. As your own words flow with the music you can feel the emotions flow, too.

Alternately, maybe you have a brand new melody rolling through your mind with words and phrases joining together to express your feelings. Writing your own song can be a powerful path to share your experience.

Drawing and Painting

Whether you prefer pencils, oil pastels or paints, creating images and using colour can be freeing. Sometimes an abstract piece that is full of colour  or dark with shadows shows your internal landscapes as you navigate your grief. Other times it can feel comforting to create an image that is symbolic of your memories of the person who died and sentiments related to your grief.

Collage

Creating memorial collage, or a scrap-book style memento is an alternative to drawing and painting for those who feel more comfortable selecting images and words and arranging them together. Using photographs, personal mementos, old magazines and craft supplies, you can create a beautiful tribute to your person that honours your relationship and memories.

Dance and Theatre

Choreography of a series of movements especially designed to express the range of your feelings or in memory of your loved one. Creating scenes that represent important moments in your relationship, or incidents of your grief experience. Through physical actions such as these, you may gain a sense of relief as you embody emotion and bring your inner world to life.

Poetry

A poignant turn of phrase. A description that creates a vivid image. Words that link together thoughts, feelings and illustrations of your experience of love and loss. Poetry can be short and simple, or it can be long, meandering through events. It can rhyme, but it doesn’t have to.

Journaling and Memoir

Writing about your feelings and experiences can be healing. If you take time regularly to create a safe and comfortable space to write in, with privacy and permission, you can begin to understand what has happened. Writing can help you make sense of your story, and move it out into the world in a way that helps you feel relief. When your story is written and rewritten until it offers insight and recovery, it may even be ready to share with others to offer support, understanding and hope for those who come after you in your particular experience of loss.

It can be painful to talk about grief. Yet healing usually involves finding someway to hold the pain, to express the experience and shift your perspective in order to ease the burden of carrying loss that is yours for life. If talking is too hard, experiment with making art.

Remember:

  1. There is no way to do this wrong. All of your art is meaningful and important just because it is yours.
  2. You don’t have to share any art you don’t want to. This process is for your healing first and foremost.
  3. Your grief is your own to navigate, in your own way, at your own pace, with expressive art or without. You are always free to choose.