October 15th is Pregnancy and Infant Loss Awareness Day

Death is a difficult subject to talk about and it can be even more difficult knowing how to support someone who is grieving a loss. For those who have lost a child, whether during the pregnancy, at birth or after, it is important to not have that death exist in silence, talk about the child and say their name, they existed, they are loved, they are missed and acknowledging their life is important.
 
Death is uncomfortable and we don’t always know how best to support someone who is grieving, the most important thing is to show up, don’t disappear, don’t tell them you’ll be back when they are feeling better, sit with them, share their grief. Often those who are grieving notice support lessens dramatically after about three months following the death, please keep checking in, please continue to talk about the child, grief takes time, a lot of it. It is not something one ever “gets over”, it gets absorbed in their life, the pain changes but the loss stays written on their hearts and it will stay with the family until the day they die. The loss of a child also echoes throughout the years, on milestones, birthdays and holidays, recognize this, ask them if they want to talk about it.
 
Try not to say things that rationalize the situation, it happened, it is devastating, it hurts like hell, there is no fixing it or making it better. If you are unsure what to say, just say “I’m here for you” and demonstrate that by actually being with them and not waiting for them to ask for you to show up. Your support matters. It is a lonely time grieving not only the child lost but the future of that child, the plans, the hopes of what their life would look like. You can also say “I don’t know what to say”; one’s mind can go blank trying to find the right thing to say but the truth is, sometimes there just isn’t a right thing to say and acknowledging that helps the person feel less lonely in their not knowing how to live with their grief, their loss.
 
Be careful what you say. You may feel saying “you’ll get pregnant again” or “you can adopt” or “if you got pregnant once, you can again” are words that will encourage them, give them hope or make them feel positive about the future, but these words minimize the grief and sadness they are feeling for this specific child; another child will never be a replacement for the deceased child.
 
If you want to help, ask if you can help in specific ways “can I make you dinner?”, “can I clean your room?”, can I organize the cards people are sending?”, don’t ask general questions like “can I help?” Grief is exhausting and can switch one’s brain off, expecting them to create ways to help just puts pressure on the grieving.
 
Please do your best to get over your discomfort to help someone in your life who has lost a child. Death is not easy and it makes people uncomfortable but it is vital to move through that to support those experiencing the loss. You deciding to live within the uncomfortable will help those who are trying to survive the shock of their trauma. You may feel helpless when you are trying to support a loved one but being there, being willing to be uncomfortable and unsure, matters more than you will ever know.
 
(Text: You were born silent. Perfect and beautiful. Still loved. Still missed. Still remembered. Everyday. Stillborn. But Still Born.)
 
Credit: Michelle Salisbury

Don’t Question the Validity of Another Person’s Disability

I was going for a walk when I met a neighbour. He looked at me and said “where’s your walker? Have you been lying to us?”

I wish I could say this was the first time when another person questioned the validity of my disability by visual cues but it wasn’t. I wish I could say this was just a bad joke, but even if he was half joking there was seriousness to the question. As a person with a disability that is sometimes visible, sometimes invisible, sometimes affecting one part of my body, sometimes another, I am made to feel like the times I don’t have a visible disability (specifically when I don’t have a mobility device with me) I have been faking my disability (to what end I don’t know) or that I am not “disabled enough”. It is exhausting dealing with one’s own health issues, chronic pain and disability but the judgements and the accusations (passed off as jokes) and the idea that disability looks like one thing takes that exhaustion level and triples it. Even as I write this I have to actively suppress my instinct to defend my disability, to explain to those reading why I sometimes use a mobility aid and sometimes don’t but always remain disabled. I feel like I owe others an explanation because that expectation is placed on me on a daily basis – but I don’t, I don’t owe you anything. My health, my chronic pain, my disability, my coping mechanisms are none of your business. Unfortunately, I still hear the words, the judgement, the tone and that does cycle through my head on loop, even when I know I should let it go. Even though I have had a disability for two decades, even though I’ve been an advocate for almost as long, even though I teach about disabilities being visible and invisible, I understand there is hierarchy to disability in many people’s minds; a visual test that I don’t always pass and it makes me defensive even as I know I have nothing to defend.

I think about myself, twenty years ago, when I was first trying to come to terms with my acquired disability and how people treated me and judged me and how that was more of a transition than anything else. How one comment, like today’s comment, would have sent me into depression and doubts and humiliation and wondering if I had a “real disability”. I guess it is progress that today’s encounter did not affect me beyond the conversation (and the writing on this post), it saddened me, it disappointed me (particularly as the neighbour himself has a disability) and it frustrated me, but I was able to move forward and go on my walk and not have it shift my mood. My friend said to me “was it just me or was that a very insensitive question?” and I nodded and said yes it was and I thought ‘just one more to add to the mountain that I have experienced and will continue to experience’. The thing is, I shouldn’t have to get used to comments like that, my emotional state staying even-keeled after comments like that shouldn’t count as a win – people not saying things like that should be counted as a win. And so I write this down to give support and a voice to the thousands of people out there who hear insensitive questions on a regular basis, who are made to feel like they need to defend their level of disability or who are made to feel that their invisible disability is not as valid as a visible disability. I write this because if we don’t make people aware of how much damage questions and judgements like that cause, we won’t move forward.

Please, don’t concern yourself with my disability or anyone else’s. Don’t judge them based on visibility – hell, don’t judge them at all. And even if you are joking, don’t – just don’t! It’s not funny, it’s hurtful and it’s ignorant and it needs to stop.

Coverage of Stephen Hawking’s Death Insultingly Ableist

Definition of Ableist: Discrimination and social prejudice against people with disabilities characterizing them as defined by their disabilities and as inferior to the non-disabled.

Pictures of Stephen Hawking walking away from his wheelchair, comments about he’s now being “freed” or “whole” are incredibly ableist and insulting to not only the man he was but also to those of us with disabilities.

Stephen Hawking does not need to be freed from his wheelchair, his wheelchair and adaptive communication board were his freedom, without them he wouldn’t have lived the life he did. His disability was a part of him and showing him apart from that after death is disrespectful to him and all he accomplished. At no other time would people take away a part of a person’s identity after death, to do so is as regressive as saying one “doesn’t see colour”. His (supposed) shortened life span, due to his disability, partly inspired his hunger for answers. His disability was a part of the whole, who he was, and he does not need to be freed from that.

These images and phrases indicate people’s misunderstanding of how liberating wheelchairs are. We are not bound to our wheelchairs, they are our freedom. Stephen Hawking has traveled the world, met with great thinkers, had a family and worked hard all his life because he had the freedom of mobility thanks to his wheelchair. The fact that people without disabilities may see wheelchairs as confining goes to show how much work we have to do to educate people about life with a disability. Stephen Hawking did not succeed despite his disability, he succeeded with his disability.

Diana Crow (@CatalyticRxn) tweeted “The odds weren’t against a disabled person achieving what Stephen Hawking did. They were against ANYONE achieving what Stephen Hawking did. We really need to stop referring to disability and success/achievement as if they’re somehow diametrically opposed.”

Please, now and in the future, consider whether your message may be ableist, reflecting your own negative opinions about disability or whether they reflect the lived experiences of those with disabilities.