From the time I was born until the time I turned 18 or 19 years old, I was involved with 2 organizations that helped me and my parents deal with the issues that having Spina Bifida brings.
The first was the Thames Valley Children’s Centre in London, Ontario and the other was the Rotary Children’s Place in Sarnia – which is now called Pathways Health Centre for Children.
I don’t know exactly how many hours I spent at these two places as a child and teen but it was A LOT.
First, it was in London at Thames Valley for frequent medical appointments, then as I grew, Rotary Children’s’ Place for additional things like Physiotherapy, Occupational Therapy and recreational activities geared toward people with disabilities.
At Thames Valley Children’s Centre, I was part of what they called they the “Spina Bifida Clinic.” Every 6 months or so, they got together all the kids with Spina Bifida in Southwestern Ontario AND all the doctors that we all needed to see. One day, all in one place.
Those were some LONG days!
There were Neurologists, Orthopedic Surgeons, Physiatrists, Urologists, Nurse Practitioners and Social Workers all there to support the children and parents in each child’s specific needs.
We waited in the waiting room reading kids books, playing with toys – playing with other kids, while my mom chatted with other mothers of disabled kids.
We would get called in one of the exam rooms, meet with a healthcare professional and then get released back to the waiting room to see the next doctor.
Usually, we were there all day!
On a side note: Thank God for our healthcare system. Say what you want about it – we all complain because it doesn’t always work perfectly, it can be slow but I’m thankful for it. It has its challenges, but overall it’s amazing. We aren’t required to re-mortgage our houses or cash in our retirement savings for healthcare – even complex healthcare.
In my early teen years, I got involved with what is now Pathways (Rotary Children’s Place) for recreational and social programs.
Swimming was my main sport – and I was pretty good at it!
At both organizations – whether it was an event, practice, social gathering, swimming competition or clinic visit – they were filled with kids who had disabilities. Lots of them. Kids with Spina Bifida, kids with Muscular Dystrophy, kids with any number of physical and developmental disabilities.
As I got older, moved away from home, got married and started regular adult life, what I have been wondering is:
Where are all the disabled people?
This has started to fascinate me more and more as I’ve recently turned 40 and I’m wondering where everyone is?
Based on what I know and who I know, there are lots of people with disabilities out there – but why don’t I see them on a daily basis? Why don’t I see them at the grocery store or at Starbucks? Why don’t I see them at events or the shopping mall?
I’ve come to a few conclusions. Remember- I’m not an expert on any of this, just observations that I’ve made and maybe you can add to the conversation.
#1 The world can still be a challenging and awkward place for people with disabilities.
In the past 35 years, Canada and the United States have made great strides in both accessibility and acceptance of people who are different. I can see many changes – we live in a completely different world than we did back then, but it’s still not perfect.
When people with disabilities go out in public, it’s hard not to get treated differently. People speak slower, talk louder and generally treat people with disabilities differently. They assume a general level of helplessness.
Sure – sometimes I need some help. I don’t do well when I have to carry things or wait in long lines so I do appreciate when someone notices and offers assistance.
This is helpful, but it’s always a fine line to walk on the part of the person offering assistance.
I get that.
You offer to help someone, anyone, and you run the risk of them being offended for the offer!
It’s always awkward when I come to a door at the same time as a woman. I was taught that you open doors for ladies, so it’s a habit. If I get there before a woman, I will open the door and say “go ahead” but this gets awkward sometimes – because they’re standing there looking at me thinking “Shouldn’t I hold the door for the disabled guy?” Sometimes it’s funny. Sometimes we stand there and say “you go ahead” “no, you go ahead”
As my mobility has declined a bit in recent years, I find myself thinking through my travel plans to pretty much anywhere.
How far will I have to walk? Are there steps that I will need to climb? Is there any elevator? Is there a place to sit? How long will I have to stand for, before I can get a seat? Is there a bathroom? If it’s something where I need to use a wheelchair, is the place accessible?
Honestly, sometimes it’s just easier to stay home with my cats!
#2 Monetary constraints force people to stay home.
This is one of the biggest issues when it comes to disabled people taking part in society. There’s monetary cost to be out and about.
- It costs money to go out for coffee.
- It costs money to go shopping.
- It costs money to go to a concert.
- It costs money to go out for dinner.
- It costs money to take a vacation.
- It costs money to drive or take a taxi to anything.
It costs money to do pretty much anything, other than stay at home!
I’m thankful that I’m able to earn income as my disability is quite manageable at this point. I don’t need or receive Government assistance at this time so this isn’t a “give me money” post…But…Please make cheques payable to…Just kidding!
Of course, it’s awkward to ask someone if they need help financially, but the truth of the matter is that anyone in Ontario who lives on Ontario Disability Support Program (ODSP) may not have enough to pay for anything beyond basic shelter, food and utilities.
Just because someone has a disability and is not able to generate a sufficient income, should they be relegated to a life of poverty while the rest of us skip along pretending all is well?
I might get accused of being a socialist by my ultra-conservative friends. I’m willing to risk that label if it means that I think that in a prosperous country like Canada, that people who have challenges beyond their control should be provided and cared for with respect and dignity, then give me that label. I don’t think we’re doing our best, that’s all.
Who sat around a boardroom table and decided that $1169 (in 2018) is an appropriate amount of money for someone to live on, for one month? I know there are additional supports like subsidized housing and utility programs, but still – any way you slice it – $1169 is not a livable amount of money in 2018 in a city like London, Ontario…or anywhere in this Province, that I’m aware of.
I’ve talked to a few people in this situation and spending an extra $10 on a lunch out with a friend, or a $40 cab ride over to an event at church (even a free event) might be the difference between making ends meet that month and not.
I know that there’s a big push among social service agencies that support people with disabilities to teach everyone to be independent – which is a good thing.
Promoting independence and working to get people fully integrated and engaged in the community is great, but where does the money come from for this? There’s not much you can do with ZERO dollars.
We’re not comparing apples to apples. This is the reality. Getting people involved in the community costs money that they aren’t likely to have. I don’t have the answer – but it’s an issue.
If you do have the opportunity to help someone in this position, please do.
#3 Finding the right employment situation isn’t easy.
You might refer back to my previous post about people meeting me for the first time. If you haven’t read it, click here for some insight on this point.
I’ve had more than one amazing initial phone interview while looking for a job over the years. Going into the interview, I’m thinking “there’s NO WAY that I won’t get this job” – and then I didn’t get the job. Like I said before, I can read people and I know that my disability has thrown off more than one good job opportunity.
I’m not blaming the prospective employer either. It is what it is.
It’s lead me to where I am today and I enjoy self-employment (most of the time). I’m thankful that I do have some skills that allow me to be self-employed. I gravitated toward computer stuff and it worked for me. God is good.
But what about people who are looking for regular employment and for one reason or another, self-employment is not the proper route? What should they do?
It gets pretty darn discouraging to go to job interview after job interview, only to NOT get the job.
Too often employers believe that people with disabilities will negatively impact their business on some level, through lost productivity or additional costs in some way. The statistics just don’t support this idea. Research it. People with disabilities actually report more productivity, fewer missed days and so on.
Just match the right person to the right job and BAM – problem solved. People with disabilities get to work, enjoy the benefits of working – everyone wins.
Except it’s not that easy – because getting work in any way will cause the loss of some or all benefits provided by the Government and many people with disabilities will need those benefits.
It’s not a great feeling when you get to the checkout at the pharmacy and they say “that will be $243….” This has happened to me on more than one occasion. I don’t say this to obtain sympathy, but to point out that being disabled is EXPENSIVE!
Honestly – The best choice for many with complex health needs is to stay on ODSP and struggle with the income in order to get the health benefits. It’s an all or nothing system.
Like I said before. I don’t have the answer.
#4 Health issues make it hard to go too far.
This is related to point #1, but I will explain it again.
I’m starting to notice this more and more and my disability is pretty manageable. Managing the needs of a disability out in the “real world” can be tough.
At home, you get into a groove. You do the same things each day. You know your routine and you know how to work around that routine. For me, I don’t go to the basement much these days. We watch TV on the main floor, on a laptop, rather than going downstairs where the TV is. It’s a waste of space now.
Except that the laundry room is down there…so…I guess that means I can’t do laundry? 🙂
Now take someone with greater mobility challenges out of that controlled environment of home and managing different aspects of disability can be hard. It takes more planning, it may require a caregiver or friend to come along, it may require other equipment. It’s not easy.
In the summer when I was wearing shorts, I liked to wear my Camo Crocs. Yes. I LOVE Crocs.
But…over time it has become harder and harder to walk without my leg brace so either I strap on the leg brace wearing shorts and risk having people look at me even more weirdly, or I struggle along without it wearing my Crocs.
My brace is called an AFO (ankle foot orthotic) basically a big piece of plastic or some other hard material that runs from just below my knee, down my calf and into my shoe. It makes finding footwear a nightmare, but it sure helps me walk!
I’m thankful that fall came and forced me to wear pants and to wear my brace again, because as much as I hate to admit it – this thing is a true blessing. I can barely walk without it.
I actually got a 2nd brace for my right leg recently, but have been hesitant to wear it.
When you walk crooked your entire life, and then you put on 2 leg braces that force your hips into proper alignment, it’s actually a weird feeling. When I wear both, I feel like I’ve had too much to drink. My equilibrium is off. It will take some practice to wear it and not feel like I’m going to fall.
Falling in public is also another concern.
My issues are pretty light and minimal to deal with actually, but it’s this kind of stuff that can force people to stay within their controlled environment, watching Netflix or trying to find another way to stay occupied. Loneliness becomes a real issue for many.
#5 Some have passed away.
And…the one I don’t want to talk about.
I have no real way to find this information out, but all the kids that I was in swimming with, was in summer day camp with or went to the Spina Bifida clinic with – well…some are not with us today.
They have passed away.
This is a sobering reality. I know of 3 people with Spina Bifida in my current and past circles and they have passed away.
When I hit the big 4-0 I started to ponder this. It’s not something you want to spend too much time thinking about,
FYI. If you have any type of illness where there’s an unknown future, make the most of TODAY. Really, no one is guaranteed tomorrow so always make the most of today.
Now, before you start commenting or sending me emails asking me if I’m dying, to my knowledge – I am not.
I feel fine.
My legs are getting weaker, but it also might have something to do with the few…(cough cough)…extra pounds I’m carrying in my mid-section.
By God’s grace – and I SERIOUSLY mean this – I am quite healthy.
I’ve got some fluid in my head. Quite a bit more than everyone else but it’s not impairing my vision or motor functions too much and seems stable. I have a tethered spinal cord which can have some crappy outcomes, but generally speaking, I’m OK.
I can truly say that I am thankful to the Lord for my health. I’m not running any marathons or taking 2KM hikes (which is a story for another time,) but I’m doing OK and I thank God for that.
God is good.