Letter/Full disclosure/My Dad

My post about having my life enriched by disability was sent to family and friends alike.

This was the response I received from a person in my life:

 Bravo Johanna! 

The ways in which you have learned to see beyond the limitations of our conventional perceptions of ‘disability’ are truly admirable. How fortunate for dear Phoenix that she will grow her life under your loving guidance.
May I respectfully suggest that you extend your understanding of the disability bias to embrace your father in a circle of support for the challenges that confront him each and every day? As you have come to realize, through the gift of your own daughter, all lives hold value. Surely this truth applies to your dad as well. And I’m inclined to believe that, in his own way, he too would prefer to be surrounded by family to the end of his days.

Fondly,

Name

My response:  I wish I knew how to do that Name.  Their response:

Well, I’m hardly one to be telling others how to live their lives. And as we both know, little in life is guaranteed. But for what they’re worth, a few thoughts come to mind:

- replacing Phoenix with your dad, care-fully re-read what you wrote for The Mighty and see what sentiments and insights also apply to him.

- open your mind and heart to accepting him as he is, just as you have with Phoenix, and try to see beyond his disabilities. 

- be prepared to go the extra mile and make sacrifices on his behalf, just as you have and will with Phoenix.

- if you believe what you wrote, that all lives hold value, surely there’s room for your father in that belief.

- where there’s a will there’s a way.

That’s about as far as I wish to go into this matter, Johanna. Whatever does or doesn’t happen is up to you guys, the Name family all together. 

This is a lot to think about. You can find some past information about my Dad here. He's been living in a long term care facility since his release from the hospital. I've been unsuccessful in being able to bring my father here to Alberta, although we don't know if he is even able to be moved to another province. He could not fly on a commercial airline. He would need a medical flight to be transported.

My feelings about my Dad are complicated and are strongly influenced by his own thoughts and feelings which were vehemently expressed before his strokes.

Some readers may remember the story of Terri Schiavo. Her court case was the spark which initiated many conversations by my father about how he wanted his end of life to look like. He was very, very clear about his wishes. He did not want to be kept alive by machines. He did not want to for his body to be kept alive once his mind was gone. He didn't want it.

That's not my judgement. It was his. And I respected his autonomy to make that determination for himself. He even went so far as to have a living will drawn up to assert his wishes. He was just so clear on the matter. My father has almost all his needs met for him. I won't go into detail about all the way other people maintain his life, I feel very confident, knowing everything I know about my father, that he would not want to live this way. He would rather be dead. Again, this is not my judgement. These are words he said himself, on many occasions, and tried to ensure through the legal means available at the time.

The fact that myself, my mother and my sister are all in agreement about this solidifies for me that this is not me projecting my beliefs and biases. These were his, which he was entitled to.

The fact remains that his body is essentially healthy. But his mind; his mind has been damaged beyond anything that is recognizable to us. He doesn't know me. He doesn't know my mom. He acknowledges our presence when we are able to visit, but not that I once was a significant person in his life, his daughter.

And so I am sad. We all are sad. He's lost so much. Before his strokes he was a vibrant and charming 70 year old you ran his own business. He cooked dinner for my mother. He followed British football and he enjoyed wine in the evening with my mother. And beyond what we have lost of him, what makes us sad is that this is his nightmare scenario. His worst fear come true.

Going back to what was written.

- open your mind and heart to accepting him as he is, just as you have with Phoenix, and try to see beyond his disabilities. 

I believe I do see him as he is. I accept him as he is. I love him with or without his disabilities.

- be prepared to go the extra mile and make sacrifices on his behalf, just as you have and will with Phoenix.

I have tried. I have tried. The effort mattered and I'm so glad I tried, but it didn't change anything in the end.

- if you believe what you wrote, that all lives hold value, surely there’s room for your father in that belief.

Yes, his life absolutely holds value. That has never been in dispute.

- where there’s a will there’s a way.

What does this mean? Does it mean that I can in fact force the provincial government to take him? Please, please show me how, I beg of you.  Does it mean I can move to Ontario? Maybe, but it's unlikely I would be able to find a comparable teaching position. I definitely cannot replace the supports I have here for Phoenix, and it would involve a lot of time and effort to transfer Mike's rehab and stroke after-care to another province. That is IF we could sell our house, IF we could afford a house in driving distance to Toronto and IF I could find a teaching position to support our family.

So many IF's. Too many to count really. Do I believe that my Dad would want to be surrounded by friends and family? Yes, OF COURSE. I just cannot make that happen. I cannot force our brother, my fathers son, to visit him even though he lives in the same city as our Dad. I cannot force you to go see him. I cannot make his friends go or other relatives to go. I have to rely on the feedback of the care staff, just as my mother does.

There is probably more that could be said, but I think that is enough for tonight.

Thank you for your letter Name.

Johanna

Hard. Better. Different.

Life has been hard, then better, then different.

Hard: Being at home with the twins during Christmas holidays was a huge wake up call for me. Wow. Two years old is a really difficult time, which should surprise no one who has raised young children, but seems to have smacked me surprisingly in the face. Every time Ash and Wren do something cheeky or naughty I think to myself "But Phoenix never did that".

I've spoken in the past about the role of the "Golden Child" in the family. That child who seems to shine and take the spot as the favourite from the parents perspective. Megan (my twin) was the Golden Child for a long time.

Megan and Oli hugging

She has a very glamorous job as a photographer/photojournalist, married an Irishman (who himself is interesting and multi-talented as well as incredibly charming), had a very tasteful wedding in Ireland, travelled internationally, had articles and photos published in many publications and in generally just has lived a great life. I knew that my parents held them in very high esteem. Not that I wasn't held in high esteem, I was. I know I was loved and valued. I know I was respected. I just didn't shine in the same way.

Right now Phoenix is the Golden Child.

Mike holding Phoenix, who looks happy

She's the easiest to spend time with. She was an easy baby. An easy 2 year old, an easy 3 year old and now continues to all around be a generally nice person to be around. She loves all one on one attention from mom or dad, but does seem to have a special attachment to me, which I love. Phoenix is easy to laugh with, she's easy to redirect, she's easy to motivate and easy to spend time with. She's the Golden Child. And because of her, and the easy relationship she built with my parents, she elevated my own status to Golden Child with my mother, because I am the Keeper of Phoenix.

But Ash and Wren? Oh boy. The problem with 2 little precocious toddlers is that when one does something naughty, like spitting her water onto the floor at meal time, the other sees it happening, thinks "That looks like fun!" and copies her sister.  Not only is it fun to spit water on the floor, it's really fun to watch Mom and Grandma react to it.

Wren standing on the kitchen table and Ash standing by the train. Both in cloth diapers. 

It's also fun to throw toys down the stairs, throw dirty clothes over the bannister, paint your bedroom walls with milk, try to pull down the blinds, bang on the windows with hard toys, climb on the kitchen table (but there are rules about climbing on the kitchen table now, they have to be wearing clothes to do this because otherwise, yuck).

And I know, I know that none of this is out of the ordinary for 2 years olds, it's just not what I've experienced before, and it gets on my last nerve.

And yes, I chose to take a picture of them doing this instead of taking them down.

Ash and Wren standing on top of the change table stripping the decal off the wall. 

Better: Thankfully, my husband surprised me with a trip to Ontario to see my BFF Melissa as well as my Dad who lives in a care home there. The best part is that I got to go by myself sans children.

So I saw Melissa who has lived in Ontario for as long as I have lived in Alberta and reconnected as if I had never left. I even got to see her Mom who I have known for as long as Melissa and meet Melissa's new BF who seems like a great guy.

And I saw my Dad, which was hard. He didn't know who I was, and moved between saying "Go away now" and "Thank you very much". What was nice was seeing a laminated photo of myself on my wedding day with Phoenix and Mike and a photo of Meg and her husband.

Mike and I dancing with Phoenix looking up at us. 

It was clear that the photo was used and had been put up and taken down numerous times, which made me happy to see. It was a hard visit. That's not the Dad I know. It's not the Dad I'm used to seeing. But it was good to see him and see that he was clean and being cared for.

Different: I thought that to get further into the world of disability that I would need to enrol in graduate courses at the university. And I would still like to in the future. It's on my "list" of things I 'd like to get to once my kids are a bit older and life gets easier (that's the assumption anyway, that life will in fact get easier once my kids get older, if that's not actually case, please feel free to keep that bit of knowledge to yourself.  I'm much happier living in blissful ignorance.

Turns out, you just need to meet the right group of people to help you find the knowledge you need to start the learning process.

In the land of the Internet and twitter and FB there was a big uproar over the holidays. You can read about it here and here and here. These are thoughts from people with disabilities about the website The Mighty, of which I am a contributor. The basic premises is that disabled people (click to find out why I used that term) are upset about how parents of disabled children are writing about their kids. They are concerned that these children are being written about in a way that is not respectful, is intrusive and embarrassing and does not preserve the child's dignity.

I used this uproar as a chance to reflect upon my writing and to think about if this is something I do myself. I used it to learn about ableism, inspiration porn and to think about some of the ableist language that I do in fact use in my day to day life. I'm trying to stop now that I am aware that my use of these words hurts people. It serves to reinforce negative stereotypes in subtle ways. So I'm working on stopping.

I'm learning. Not in the way I thought I was going to learn, but learning nonetheless with a small peer group of writers who are disabled themselves or have significant people in their lives with disabilities, like me. I'm so grateful for them too.

Kitchen Reno!

Here are the before pictures of my kitchen Reno. We have 6 people sharing a small kitchen and an office that can be relocated  and which can be made much, much smaller. 

The kitchen with the husband 

The office and front entrance way 

And the wall connecting the two

See those 3 bins? Recycling. That needs to go too (or at least be hidden in a drawer). 

The idea is to push the kitchen into the office and then give the front entrance more space and twice as much closet space. 

We've been in the house for almost 5 years and it still does not work for us. We need more storage space. We need shelves and cupboards. We need places to put All. Of. Our. Stuff. So one of the other things I am planning is to do built

In shelves next to the fire place. Open shelves on top and some cupboard drawers below which of course can be child locked. 

Here's some of the ideas I have for our new kitchen. I love the white cupboards and the marble countertops. I like the backsplash and I would make the island grey, not the black it is in this photo. 

How disability has enriched my life

For a long time disability was a thing that existed out there. In a place I was aware of, and that I worked with, but wasn't a part of my day to day life like it is now. It didn't affect my consciousness, it didn't change how I thought about the world, and it didn't make me think about the subtle attitudes surrounding disability which are woven into our language, our thoughts, and the structure of our society. 

Disability was something that was ok when other parents had to deal with it, but it was not for me, thank you very much. It wasn't something that I wanted as part of my life.

Then my daughter Phoenix was born, all 6lbs 5oz of her, ready to meet her parents at 36 weeks and carrying with her, in every beautiful cell, an extra copy of her 21st chromosome. 

That moment when your heart breaks, when you realize that your child is going to be seen by society as less than as other and as unwanted. I wanted her, there was no doubt about that, it was just the disability which caused me so much distress. The cognitive disability especially.

I've come to learn that this perception of disability as a negative thing is an atitude called ableism, although I prefer the term disability bias. It's a social belief that disability is bad, wrong, other. That it is an unacceptable or unnatural way of being in the world. 

It's looking at others through your own eyes and judging their lives to hold less value, because it differs so greatly from our own. The truth is that we can never project our own experiences to determine the worth or value of another person's life. It doesn't work that way. 

All lives hold value. All people suffer. Everyone struggles. It's not for me to say that my daughter will find less satisfaction with her life or will struggle more because she has a disability. All she will ever know is the life she has been given - that of a child of a teacher and a stay at home father, a sister to identical twins, a person with alopecia, a friend, a neighbour, a good reader, someone who learns, loves and expresses herself in her own unique way. When I finally understood these truths is when I truly understood disability bias.

I have the good fortune of living in a multigenerational house. My mother lives with us and is a daily part of our lives. Although it was decided that my mother would live with us because of age and disability, the notion of burden never crossed my mind. Ever. Only how delightful it would be to have her as part of our household. However, other people's comments about her living with us are fascinating.

"Oh, that must be hard". 

No, it's not. It's lovely to have my mother with us. She's an amazing lady and the relationship she has with her grandkids is beautiful to watch. 

"That's too bad"

On the contrary, it's not bad at all. It's wonderful. I have another adult in my house who can empathize with how challenging it is to raise twins (having raised twins herself), who I can share about my day with and whose perspective and input I value immensely. 

 

It's very similar to how I feel about the possibility of Phoenix living with us as an adult. I love Phoenix. She's a delightful child with whom I have a special bond. If she lives with me into her adult years, then great. If my twins live with me into their own adult years that's ok too. This is my family. The family I was so happy to build and am so grateful to have. I hope to be surrounded by family to the end of my days. It's one of the greatest wishes of my heart.

It's been a year now and I continue to value her presence in our house. What a gift for my children to have daily access to such a treasured family member who dotes on them as only a Grandma can. What a gift for me to have my mother in my home providing company and companionship to us all.

Both Phoenix and my mother provide the context from which I have been invited into the world of disability. There are 3 or 4 Down syndrome families which I have forged close bonds with. These families have gifted me differing perspectives and understandings of how disability has enriched their lives as well as provided a circle of support for challenges which confront our children.

I have also had the good fortune to "meet" many wise and educated parents and members of the disability community who further my own growing knowledge about the field of disability. Things like the medical model vs the social model of disability. Or how important my use of language is. Or how using terms related to disability such as "lame, crazy, stupid" serve to perpetuate the attitude that disabilities are synonymous with negative attributes.

Disability surrounds me. It comforts me. It's given me tremendous purpose, has helped shaped my writing and is prompting me to continue my formal education in the future. It's a part of my life that I am incredibly grateful for.