Let’s Talk About (Disability &) Sex!

Had an incredible time today as I was interviewed on a podcast about disability, where I got to talk about not only being disabled, but being part of a disabled family, and the highs and the lows of that. One of the questions I was asked was, How do your different disabilities play a role in your relationship dynamic?

Here’s a little sample of what I shared:

Having anyone in a family with a disability affects the dynamic, because first of all that person likely requires some extra supports that we don’t normally think of in the relationship dynamic – maybe help with personal care or help with emotional regulation or help physically navigating a space or help with executive functioning skills or whatever.

But then secondly, being disabled – and navigating an able-bodied world as a disabled person – is tiring. My therapist taught me that when we think of our sort of ‘threshold’ for stress, we often think of it as having separate ‘tanks’ – like you’d have a pain tank or a fatigue tank or a ‘stressors’ tank – but it’s not like that. Everything’s lumped in together. So for me, when my pain is at its usual 3-5 out of ten, that’s taken up 3-5 stressor points in my capacity to cope with life before I even get out of bed, or deal with laundry or tried to convince exhausted teenagers that it’s time to catch the schoolbus or whatever. Does that make sense?

And then, when you have MULTIPLE people who are disabled in a family – including your partner – then there’s no one with a ‘full’ tank to be able to pick up the slack. We kind of sink or swim by leaning just enough on one another that we stay upright without leaning so much that we knock each other over!

I think there are probably four areas where we see this really big-time:

#1 would be energy capacity – because being autistic and working full time at a higher-stress job in Toronto means my husband is having to work very hard to ‘pass’ as neurotypical a lot of the time during the day. I have an energy condition but like to pretend that I’m still capable of many things myself. This leaves the two of us both exhausted and wishing the other person could take care of us at the end of the day.

#2 would be emotional interactions. One of the things our autism does is that it amplifies emotional inputs. So if I’m scared about a thing – like an upcoming specialist appointment – and my husband is ALSO scared about it, and I come to tell him about being scared about it, there’s a pretty good chance that instead of calming me down and reassuring me, he’ll freak out and tell me off for convincing him that the world has ended. And it can take us a while to try to sort that out, because, unfortunately, I’ll then respond to his fear with more of my own and we have this horrible tendency to spiral. One of the things we’ve learned to do is recognize this as FLOODING, and to catch ourselves earlier and earlier in the spiral and take some time away to calm down and try to understand what happened before regrouping and taking each person’s emotions out separately to look at them and care for them. Sometimes we do this well, sometimes we still do it badly, but that’s definitely improved over the last couple of years.

#3 would be strain on the finances – as I said, we’re pretty fortunate as disabled folks go, in that my husband has a pretty good job, and he has benefits, but being disabled is REALLY expensive – and having four people in the family with a disability, with one in university – is a LOT. Between the needs of everyone’s disabilities I’ve had to work very sparingly over the past 20 years, and am just now trying to get my coaching business to pick up a bit because it’s finally becoming an option to work more myself, but we’ve essentially been on one income for most of our adult lives, and that means that where my husband’s colleagues are buying fancy cars and going on great vacations at this point in life, we’re trying to argue our insurance company into paying for the co-pay on our wheelchairs and trying to renovate our home to make it accessible and trying to psych ourselves up to buy an accessible van so that I can get around again, and that really does create a lot of extra stress.

#4 would be the limitations on what we can do. My husband’s a very sensory-seeking individual. He loves running and biking and triathlon and rock climbing and swimming and hiking and on and on, and I loved doing those things but could never really manage them. Now with the increase in my disabilities, I’m pretty much incapable of any of it. And relationships – they thrive on shared interests and shared activities, and especially for those of us on the spectrum who may prefer having just one or two very close friends, (or in our case, mostly each other as partners) this has made things really difficult.

What we’ve learned in all of this is that the standard ‘solutions’ simply don’t work for us – disability forces us to be creative in ways that we never would have otherwise have to be.

So, if you are part of a disabled family, or live with disability yourself, I’d love to hear some of YOUR creative solutions!

(If you want to listen to the whole thing – sex talk included – you can find it here!)

How I Can Help

Sometimes it’s hard to describe what I do as a coach – and why you might need a coach – because it can vary so greatly. So here are a few thoughts:

If you are the parent of an LGBTQ child, struggling to know how to support your child, I can help.

If you are early on in your disability journey and struggling to figure out how to navigate your day to day life or your emotions around your disability, I can help.

If you have received a one-time Autism amount or have a childhood budget and are looking for alternatives to ABA for training and support, I can help.

 

If you have experienced a miscarriage, stillbirth or infant loss and feel like you “should” be feeling better, but you still feel overwhelmed, I can help.

 

If your child has a disability or major illness and you are struggling with your mental health, or navigating the system here in Ontario, or coming up with solutions for the challenges of day to day life, I can help.

 

If you feel like you are constantly having to acquiesce to the needs of those around you – playing the role of people-pleaser in an attempt to survive – I can help.

 

If you have experienced a major illness or disability in your partner and haven’t had a chance to process that with anyone yet, I can help.

 

I have 17 years of experience – both personal and professional – that covers all of these areas and more.

 

We don’t have to live close to each other for me to help – I do more than 80% of my client work via video conferencing, allowing you to save travel time and connect with the best person for your situation.

 

Send me a message, and let’s start this conversation.

Universal Design: Bathrooms

The next stop in our Universal Design series is one that we use every day – the bathroom!

Bathrooms are critical to our physical and emotional well-being, but are also an incredibly major issue for accessibility far before most of us would consider ourselves disabled!

There are three main issues to address when it comes to Universal Design in the bathroom: entry, space, and safety.

Entry

As with the rest of the house, the entry is critical to our capacity to use a bathroom. While standard doors in a home may be as wide as 32″, bathroom doors may be anywhere from 24″-30″, creating a situation where very few can enter with a walker, wheelchair, laundry basket or squirmy toddler in tow.

Ensuring that bathroom entryways are 36″-40″ in width will allow entry for all into this most crucial of household rooms!

Space

Simply passing through the door of the bathroom doesn’t always solve the problem. Bathrooms have historically been incredibly tight spaces and, as such, are often difficult to enter fully, turn around in or do the tasks we need to do. Think about bathing your squirmy toddler, helping a partner through morning sickness or the flu, or sharing the space with the kids to brush your teeth on a busy weekday morning.

Creating a minimum 60″ turning radius somewhere in the bathroom will accomplish more than simply allowing wheelchairs to navigate the space. While this will require a small increase in size, good design can accomplish this requirement with minimal increase in overall square footage.

Safety

Beyond that, slippery floors and poorly fastened towel rails and toilet paper dispensers combine to make bathrooms the most common place for falls. Consider this toilet paper dispenser (or the towel rail installed in the wall of the adjacent shower) on top of peel-and-stick tiles against rotting drywall – almost nothing to support the weight of a child, much less an adult who slips in the shower.

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Slippery tiles can also contribute to the safety of a bathroom, but by choosing flooring with higher grip and installing plywood-backed grab bars beside the toilet and tub, everyone’s bathroom safety – young and old – improves, preventing falls that may result in bruises, cuts and even broken bones.

This universally designed bathrooms just needs the use of a knee space below the sink to make it fully accessible:

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Other blog posts in this series:

The Case for Universally Designed Communities

“Can’t You Just Add An Elevator?”

Universal Design: Property Considerations

The Seven Principles of Universal Design

Universal Design: Zero Barrier Entries

Universal Design: Entryways, Hallways and Room Layouts

Canaries

What do you know about canaries? I’m about to do a deep dive.

Surprisingly enough this directly relates to disability advocacy.

According to Wikipedia, canaries were used to detect carbon monoxide in coal mining from around 1913, when they realized that toxic gases such as carbon monoxide or asphyxiant gases such as methane in the mine would affect the bird before affecting the miners.

Canaries are songbirds, and so when the birds stopped singing, their silence alerted miners to the fact that conditions were unsafe.

 

The birds were generally kept in carriers which had small oxygen bottles attached to revive the birds, so that they could be used multiple times within the mine.

 

The phrase “canary in a coal mine” comes from this practice, and is frequently used to refer to a person or thing which serves as an early warning of a coming crisis.

 

I am convinced that folks with disabilities are some of canaries in the coal mine of our society. We are much more frequently affected – to a greater degree, and much sooner – by societal changes or toxins that are actually of harm to humanity in general.

 

This is true when it comes to obvious correlations like health care and the social safety net. It’s also true when it comes to the way in which we construct our houses, the capacity for social connection/cohesion, and the chemicals we are putting in our food supply.

 

Listening to and valuing the input of the disabled folks around you is good for them, but it may also be good for you.

 

So if you are living with someone with a disability I would encourage you to listen to them – to value their insight. Just because something doesn’t consciously hurt you, doesn’t mean it isn’t hurting you. You may be surprised how much better life could be!

Perspecticals

My new chair has given me a new perspective on the world. It’s incredible to me to be able to sit taller than I could ever stand, and it makes me realise the power of different perspectives or lenses on how we see and understand the world – our perspecticals.

The lens we use to view the world around us is critical to the way in which we experience life. If we think that everyone is out to get us, we will experience people’s actions as intentionally, maliciously hurtful. If we think that we have control and agency in our world, we are much more likely to take action and make choices that positively impact us in our day to day life.

Our perspecticals affect how we deal with emotions, pain, change, family dynamics, work issues and everything in between. And they are encouraged and developed by the stories we tell ourselves about ourselves and others.

 

Unfortunately, most of these stories were created/written first when we were children. Some we came up with ourselves, with our young, inexperienced brains to try to explain the things that were happening around us, and some were given to us by the adults and other children around us.

 

Either way, most of us never take the time as adults to consider which of these stories we actually agree with – which ones we’re interested in giving power to. Which means we often find ourselves wearing perspecticals that make our lives more complicated, cut us off from healthy relationships and leave us beating up on ourselves for decades.

 

The solution to all of this isn’t to try harder or to screw up our eyes and try to squint our way to a new perspective.

 

The solution is found in gently integrating our stories with our values – getting honest, one story at a time, about the people we want to be, the ways we want to see the world and the perspective we choose as adults to hold.

 

This is my Values Based Integration Process.

 

Interested? Get in touch.

Straightening the Walls

“What are you doing today?”

“We’re straightening the walls.”

(Wishes they had said something exciting like “the roof is going up”, then thinks about it for an extra second and realises the last thing I’d want is a roof on top of crooked walls…)

“Good. I appreciate straight walls!”

 

Watching a house be built is both an incredibly quick and an incredibly slow process.

 

Every time I go over to visit, more work has been completed, but also, I don’t think days and weeks have crawled by this slowly since I was a kid waiting for Christmas or summer vacation!

 

Here’s the thing, though. We WANT the walls to be straight. We WANT the floor to be level. We WANT the pipes to line up and the windows to open the right direction and ten thousand other details (literally) to be correct, BECAUSE THIS IS GOING TO BE OUR HOME.

 

We’re going to LIVE here – hopefully for the rest of our lives!

 

So we want it to be done well.

 

The same is true with life work. Sometimes it’s a big day when a wall comes down or we have a Big Breakthrough Moment. But BBM’s are only one element of the work we need to do, and the quality of the life that we will build is not found exclusively in these moments, but interwoven into the ten thousand other moments that help us create a stable, solid foundation to live off of.

 

When was the last time you paused for a moment to straighten your walls?

Universal Design: Entryways, Hallways and Room Layouts

We started with our discussion of Universal Design Considerations with Zero Barrier Entries. So the logical next step would be Entryways, Hallways and Room Layouts.

There are two key  components to these areas to consider.

The first is room to move. The second is ease of navigation.

Room to Move

Room to move means enough space width-wise to navigate a wheelchair through the entryway, down the hall and around the rooms. That requires a minimum of 36″-48″ clear space to navigate in a forward or backward direction. This is true in the entryway (including clearance to close the door behind you when you enter). This is true in the hallway (including through any internal doorways) and this is true in the various rooms (including around beds, furniture, etc.)

Room to move also requires enough space for a turning radius. Although 36″-48″ is required for forward and backward navigation, a full 60″ is recommended (and needed for many chairs) to turn around. This is especially true for power wheelchairs. While you do not need this width in all locations of a home, each room should have at least one space where turning is possible – ideally in a fairly central location, to limit the distance you need to reverse to navigate the space.

It simplifies all of our daily tasks, making it less likely that you will turn an ankle, bang an elbow, or struggle to get your laundry basket, suitcase or backpack through the door when you’re rushing to the next item on your list. These couple of extra inches also provide mental ‘breathing space’ for us, and who doesn’t need a bit more of that in our lives?

So along with creating space for wheelchairs, this room to move will make it easier to travel throughout your house and function within it, fulfilling Principles 1, 2, 5, 6, and 7 of Universal Design – Equitable Use, Flexibility of Use, Tolerance for Error, Low Physical Effort and Size and Space for Approach and Use.

Ease of Navigation

Ease of navigation again includes two fairly clear components: physical ease of use (Principles 1, 2, 5, 6 and 7 – as above) and intuitive ease of use (Principles 3 and 4 – Simple and Intuitive to Use and Perceptible information).

To create ease of navigation on a physical level we reduce transitions and lips in flooring within spaces and between spaces, avoiding unnecessary tripping hazards. We create straight hallways with simple, 90º turns into rooms wherever possible. We remove unnecessary doors, and ensure that each doorway has space to open to a minimum of 36″. All of these together reduce effort and tolerance of error, and increase how easily -and how flexibly – everyone can access the space.

The second part of navigation, however, is making it intuitive. Regardless of the state of our mental faculties, we all have days when we’re bone-weary tired. We have moments when – for whatever reason – we bumble around in the dark, late at night. And for some of us, there are reasons why it can be easy to lose our way as we move around a house, even in the middle of the day. Fabulously enough, many of the things that create better physical ease of navigation help us with intuitive navigation: straight hallways and limited doors allow clear sight lines that help orient us and keep us going in the right direction and 90º turns are easy to peak around to see which room we’ve come to.

But there are a couple of other things we can add to this that will also help us with navigation. The first is natural light, which subconsciously helps us to orient within a space. The more options – and directions – you have to bring in natural light the better! The second is to use nightlights in hallways to help illuminate the space after dark to help people navigate easily after dark. And the third is to use visual signs on bathrooms and bedrooms to help distinguish one room from another.

Each of these intuitive prompts simplifies navigation overall for every member – and visitor – of the household. They lower our mental load, make it far less likely that we will become disoriented, and create more opportunities to enjoy the space!

Other blog posts in this series:

The Case for Universally Designed Communities

“Can’t You Just Add An Elevator?”

Universal Design: Property Considerations

The Seven Principles of Universal Design

Universal Design: Zero Barrier Entries

Universal Design: Bathrooms

Disability From All Sides

I live at an interesting intersection.

I am a disabled woman raising disabled kids.

Which means I spend time in both “disabled” spaces and “special needs parenting” spaces.

I know disability from both sides.

 

I know what it’s like to worry about your children and their disabilities. I know what it’s like to have to advocate for them and check on whether or not their breathing and rush them to the hospital and hope the doctors will actually do something. I know the pain of feeling helpless and powerless against things beyond your control – everything from your child’s disability to your partner’s response to the systemic problems we have with funding and disability.

 

But I also know what it’s like to live with chronic, unrelenting pain. I know what it’s like to be a child and feel like other people can’t accept you because they won’t acknowledge that a fundamental part of what makes you, you is your disability. I know what it’s like to live constantly feeling like you’re a burden, like you have to try harder, like you have to protect your parents from your disability.

 

I know so many incredible, ‘able’ parents, whose character and determination are creating amazing futures for their kids. But as a disabled parent of disabled kids, there are three things I so frequently want to add to that conversation:

 

1. Please, do your grief work. Make time and space to talk to a coach or therapist who understands disability deeply (if you don’t know someone, feel free to send me a message!)

 

2. Please, remember that your child’s disability is foundational to the way they see themselves and the way they see the world. That means that they need the world explained through this lens. They need you to join them in curiosity and wonder to see the world through – and give language for – their partially sighted, spasming, pain-filled, wheelchair-using eyes and then show them how to paint a positive, disability-embracing future for themselves.

 

3. Please remember that the goal isn’t to create as able-bodied a human as possible. The goal is to help your disabled child become all THEY were made to be. So don’t be afraid to use the supports (like wheelchairs, ASL, AAC, visual stories, etc) that will ENABLE that!

 

I know it sounds like extra on top of everything else you have to do, but it will make a difference – for both of you!

Perspective

Perspective is an interesting thing, isn’t it? When we were in Toronto this week, we stayed in a condo overnight and I had this unusual view out my bedroom window. Everything seemed both larger and tinier than in real life…

Some perspectives are comfortable for us. Others leave us feeling off-kilter.

Having lived my entire life in the suburbs, I didn’t realise just how uncomfortable this perspective would feel for me until I was there. But it turns out I *really* don’t like heights, and I also feel claustrophobic if I can’t see the sky, and it took me a while to be able to appreciate this view.

 

Perspective differences don’t just crop up when I’m 33-storeys high. In fact, in my context they’re far more common in my relationships with my teens and partner, with my extended family, with my friends and neighbors.

 

So what do we do? We get HONEST about them. We NAME the existence of the difference so that we become AWARE of what is going on.

 

Then we GROUND ourselves in our values, so that we feel SECURE.

 

Finally, we bring our honest, grounded selves to the conversation with a COMPASSIONATE CURIOSITY about the other person’s perspective.

 

And, if we’re lucky, we’ll discover the BEAUTY hiding behind what we previously could only fear.

Medical Trauma

I grew up at Sick Kids. I had multiple operations over the years. Almost every surgery came with excruciatingly painful complications.

One of those surgeries happened 33 years ago today.

I was seven.

 

I remember it vividly, including being in a hospital room which – for all intents and purposes – could very easily be this one.

 

What I experienced that week in the hospital – and so many times thereafter – was medical trauma.

 

One of the best ways I’ve found of understanding trauma is as a single, horrific event or a series of repeated events in which you felt unsafe, dismissed and devalued, and in which you experienced a partial or total lack of agency and autonomy.

 

We can’t heal what we don’t accept, and we can’t accept what we don’t understand. So understanding that what we experienced “counts” as trauma is the first step to realising that it doesn’t have to be the end of our story.

 

Today I’m here waiting for my daughter, who’s appointment is necessary because, despite all of the medical procedures I had done, they have never been able to figure out what the root cause of all of this disability we share might be.

 

Today is hard, because all of the emotions are up at the surface.

 

Today is hard, because I am still working through the trauma of what I have experienced.

We need to get better at protecting against medical trauma.

 

We need to get better at addressing medical trauma when it happens.

 

We need to get better at screening families for generational medical trauma, and providing supports around it, so that families can show up at their best for the next generation, regardless of their experiences.

If medical trauma has been part of your story, know this: it doesn’t have to be the whole of your story, and it doesn’t have to be the end of your story. It is possible to heal the trauma that you have been through – possible to feel safe again, to be heard and valued, and to regain agency and autonomy in your world, even in the face of severe disabilities (yours or your child’s). If this post has resonated with you, please – get in touch!