Awhile ago, I mentioned that I was involved with a theatre production called Mine to Have; it’s about sensuality and circumstance for those with disabilities. I have been very busy with rehearsals for the production and filming different things in my home for the digital version – objects, rooms, windows, doors… so many things myself. It’s been both fun and interesting to say the least because for someone like me who doesn’t have a lot of find motor function I need to find people to run my technology for me so I can get some great footage; so that’s been a challenge for sure. I’m very proud to say that we are doing a zoom performance on Tuesday, May 18 at 7 PM CST. I’d love to see a lot of people out there. Come on out and see what our where our show is all about. If you would like, you can head to my Facebook page Don’t Disable Enable to register. I’ll also leave the link below. Hope to see you all there!
Hey guys, this is going to be a podcast episode discussing my experience with medical Cannabis. It’ll be more of a conversation with Shaylee and I and will be up shortly.
This will be a post in podcast form. Will be recorded shortly. Post will be updated with link to Spotify episode once it is recorded.
Hi EPSY 400 students,
I just wanted to pop on here and say thank you for being such an amazing audience for both of my presentations. You guys were super engaged and had amazing questions that both Shaylee and I were happy to answer.
I mentioned this in my presentations but, if you feel so inclined, please write me a testimonial about the experience. It would help others to understand exactly what it is that I do. Any testimonials can be emailed to email@example.com. You can also give that email to anyone you think may want to hear me speak.
March is Cerebral Palsy Awareness Month. Today, March 25th, is actually Cerebral Palsy Awareness Day. As such, I figured I should tell you about it. Up until this point, all I’ve told you is that I have CP; I haven’t actually told you much of what that entails. So, that is what this post is going to be.
I was diagnosed with Cerebral Palsy at 5.5 months old. The degree of CP that I have severely affects my find motor skills; to put that in perspective for you I have one finger on my right hand the allows me to push the home button on my iPhone (or any buttons for that matter), my hand and wrist can open enough for me to grasp some bigger objects including, but not limited to, the handle on my electric wheelchair to be able to drive around and my utensils to be able to feed myself. That way, I don’t have to depend on others to get where I need to go or do something as simple as feed myself. I learned to feed myself when I was 16. Although I tried to reach this mile stone as a toddler, I did not have the motor functions to pursue this activity until I was 16 gives old. It started off with my mom sitting at the table with me; she gave me one bite of my banana and she turned around. I held onto that banana for 10 minutes trying to figure it out. At first the active feeding myself felt like tedious chore. I did not want to do it, but as I practiced more I became faster and more confident. I get frustrated at times because sometimes my hands seize up on me and prevent me from doing this simple task, however that doesn’t stop me from trying.
The same thing goes for another aspect of my disability – my cognitive struggles that I have. Learning and comprehending feels like a guessing game that no one can define for me but myself. Sometimes my brain feels like it’s on high speed and sometimes it feels like it’s on dial-up. For example it might take me 30 minutes or more to figure out a concept or joke if it is not broken down into terms that I understand, but this doesn’t mean that I am not smart. It just means I require a little more support in order to learn/understand. I think we all do at times so I ask people to be patient with me and answer the many questions I may have for them after they’ve explain something.
There’s so many aspects to my disability I want to share, but I wanted to make sure the main ones that I feel are known. My last one is spasticity. You may being be wondering what the heck is that? What does that even mean? Basically, for myself, it means that my muscles are in constant contraction. Imagine elastic bands attached to your muscles getting tighter and tighter as time goes on. As I sit, my muscles get tighter because of the the lack of movement in my limbs (especially for my legs). Spasticity is a condition associated with Cerebral Palsy and there’s different degrees of spasticity. Mine is very severe. Like I said before, those elastic bands never release for me; only when someone moves me from side to side to remove clothing, to change my position in the night, or when I go into a swimming pool do the elastic bands give me a break. It feels great.
When I go swimming I am weightless – I can walk. I am free in the water but obviously I don’t have a swimming pool at my disposal. So, there are other treatments These include: Botox injections (which I receive in my hands and my wrists to keep them comfortable as well as sometimes in my arms). This isn’t the type of Botox that keeps me young, either. When I describe Botox to people they often say that they thought Botox was only for aging or cosmetic reasons and not for medical purposes. However, once those eight needles are into my hands/arms I am good for three months. I can move my hands/arms much more freely after the Botox. I also have other medications that keep my pain levels at bay, but having Cerebral Palsy is not problem for me overall. It’s frustrating at times, but I have it and don’t know anything difference so I would not change it. Even if someone give me a million dollars and said “here’s some stem cells to help you walk”, I don’t know if I would. I would have to learn how to function like able-bodied person. I would have to learn how to do things like walk, use the washroom, do my own laundry, cut my own food, etc. Those are all things I’ve never done. Not to say those of us with disabilities can’t do those things, but I personally am not able to do those household chores. I’m kind of grateful for that. I don’t have to do laundry, I don’t have to do dishes ,I don’t have to worry about a car payment (I get it personal chauffeurs to drive me around lol), I don’t have to cook my own supper, etc. I take paratransit to get around. I love riding the bus. I’m a very social person so bus rides are entertaining. Sometimes I wish I could do things that my friends do such as go to friend’s house or go to the cabin, or travel the world without any obstacles – like stairs or needing a caregiver, etc. There is good inside every obstacle that one might have. Don’t get me wrong, sometimes I look at things negatively as we all do but living with Cerebral Palsy has helped me to educate others about disability and difference. Disability is, in my opinion, all about discovery, teaching, learning, exploring, and educating the people around us. They are the ones that can help us navigate the world. We are not interested in the pity or sympathy; we are comfortable in our skin and want others to be comfortable around us as well.
Next week, I have the exciting opportunity to speak to a couple of Educational Psychology classes. I’m looking forward to meeting and chatting with you guys! This post is your opportunity to ask any questions you may have and I will do my best to get to them all during the presentations. In your comments, please let me know your name and which class you are in (March 29th or 30th) just so I’m answering questions in the appropriate presentation. Also, if you feel inclined to do so after my presentation, leave me some testimonials/ feedback. I always want to look for ways to improve.
I look forward to all your questions. See you next week!!
It has been a hell of a week….Continue reading to learn why.
During the holidays my family and I never seem to have good luck. Nothing ever goes completely smoothly. Usually if one thing goes wrong, it all goes wrong. 2021 unfortunately continued that trend. First our van broke down, then the dishwasher broke down, then the oven decided to break down as well. Just our luck.
On the upside, despite the chaos that has gone on, I am happy that I still got to go to “farm camp” to visit some of my loved ones on Saturday. We made sausage until 11 PM; I definitely have more appreciation for where our food comes from after making sausage for….roughly 8 (or maybe even 12) hours by the time we were all said and done. If I have taken anything positive out of the pandemic it’s that it has forced me to explore new goals that I have always wanted to pursue, but never actually had the time to sit down and research. When all you can do is sit around on your electronic devices, though, you might as well learn something.
Those who know me know that electronic learning doesn’t always cut it, though. I like to be out and about. I’m actually a little bit frustrated because I didn’t have to go to the doctor’s office as soon as I thought. I never thought I would say I look forward to every doctor’s appointment. Usually people don’t enjoy going to the doctor, but when it’s your only outing/change of scenery, you make it a fun adventure.
Anyways, instead of going on about not being able to go out to my doctor’s appointment (I rescheduled it for a later date), I wanted to tell you guys something else I’ve been working on. I decided to research starting my own business. I’m still in the preliminary stages for sure, but anything is possible if you put your mind and your heart into it. So, I am doing exactly that – just going for it regardless of what people think or say. 2020 has taught me to reflect on my passions, goals, and dreams. I never thought I would say that I would like to be a business owner and I’m still not sure about business at all, but that’s what research is for. I believe I will find my way for sure, but it will take time. The world wasn’t built in a day after all.
Shoutout to my fellow student researchers at Astonished! Astonished is a program that helps young adults address barriers. Any questions or feedback on my PATH presentation that Emma shared on my behalf during the showcase would be appreciated. One of my goals is to create a recreational program, similar to Astonished, but obviously very unique.
I am trying to do some qualitative research to find out what your ideal recreational program would be. If COVID-19 didn’t exist and you had the opportunity to attend a new recreational program, what would that program look like? The sky is the limit.
Eventually I would like to expand this recreational program into a place where people could stay for a weekend. If you could have anything in this place, what would you have? Please elaborate on these questions. I will also have this sent this out in an email through one of the Astonished staff. If you could take some time over the break to come up with some answers and feedback that you be greatly appreciated.
Other members of the disability community are welcomed to chime in with their responses.
Happy Holidays Everyone!
Today I thought it would be cool to post some of my writing about disability, since today (Dec. 3/2020) is the International Day of Persons with Disabilities. Here’s a monologue I wrote for the first play I did with The Other Ordinary theatre company. I hope you enjoy!
Society defines people with disabilities as not normal. I often wonder what the definition of “normal” is. I can confidently say that with the right adaptations those of us who fall into the category of not “normal” can do anything and everything we desire.
Our physical and intellectual limitations should not have any effect on how we are perceived!
Society’s perceptions of disability are often based on three specific things: physical appearance, intellectual ability, and physical capabilities. No one will ever be able to address or change these false perceptions. With the exception of we who continue to create and spread the ideas.
To those of you who do not take the time to understand I offer a suggestion to eliminate these stereotypes. First of all, educate yourself before making any assumptions. Ask questions. Listen more. Talk less.
To look beyond medical diagnoses is to realize there is a living, breathing, feeling human being that has valuable contributions to make to society. We are not interested in your pity or sympathy; we are comfortable in our skin!
Disability does not change a person’s identity or their personality. Just because our bodies may look different and do not flex and bend the way you think theyshould, does not make us foreign from those of able body.
Unfortunately disability is not a personal choice. Rather, it is a curve ball in life. It does not mean your life is over. It simply means the life journey ahead is truly unique. In spite of all of the unexpected challenges, we continue to live and thrive every day to prove people wrong!
Even if I cannot walk, run, or jump I still have a brain that allows me to think and speak for myself. Society, I ask, please allow me to embrace the human rights we all share. As much as you may think the word ‘disabled’ means I’m unable tounderstand or speak against un-inclusiveness, you are wrong!
Just because I use a wheelchair to get around does not mean I lose the ability to express my opinions or feelings. Wheelchairs are not meant to scare people they are to empower those who need them; somebody’s source of mobility does not affect the use of their brain.
My take home message is don’t get caught up in society’s perceptions of disability and in doing so limit me!
A few weeks ago, I had the opportunity to present to a fantastic group of education students at the University of Regina. I would like to thank all of the students for asking such great questions and being so attentive to what I had to say. With all that said, I feel my presentation was not as thorough as it could have been. So, I am open to any questions, comments, curiosities, feedback, etc. Anything you want to ask, fire away! And to the class I presented to, if you put anything you had asked in the Zoom chat in the comments below, I will do my best to answer you there. 🙂
In honour of National Accessibility Month, I wanted to tell you guys about a fundraiser that the Rick Hansen Foundation is doing. As an ambassador for the foundation, I appreciate everything they do to continue making the world more accessible to myself and others. If you feel so inclined, I encourage you to donate to their efforts by texting 45678. Each text is a donation of $5. As an added incentive, a generous donor has agreed to match all text donations dollar-for-dollar up to $50,000!
A few weeks ago, I went to visit my editor to drop off some stuff and catch up. I came into the coffee shop and she came down with a CCA sporting the food and drinks we had ordered. The CCA got us all set up (saved Shaylee the effort) and we started chatting.
We should’ve known things were going too smoothly. Shaylee grabbed the stuff I had brought her out of my bag. One of these things happened to come in a child-proof bottle. Never being one to back away from a challenge, Shaylee set about attempting to open it. In theory, it was relatively simple: push the cap of the bottle down and twist at the same time. In reality, it was quite the adventure.
No matter how many times Shaylee tried, despite knowing exactly how the bottle was supposed to open, she just couldn’t get her hands to cooperate. I watched her struggle for probably ten minutes before she finally gave up, hands raw and sore from the effort.
It’s not very often that Shaylee runs into something like that – she’s usually the one that handles all things requiring dexterity when we hang out. To get stuck opening something, especially considering it was a product meant to help those with disabilities, made us both stop and think. Packaging really does need to start becoming more accessible. I understand child-proofing; if it’s something a child shouldn’t be getting into, obviously companies need to prevent that. However, they should not be doing it in a way that also hinders those with limited hand function. Shaylee, for example, suggested that companies default more to the “mind puzzle” style of childproofing. Many bottles of Tylenol have a child proof system that involves simply turning the lid around until an arrow on the lid of the bottle and another arrow on the bottle itself line up. Then the lid simply pops open. Minimal coordination required and still pretty child proof. It would be nice if all companies started thinking in a similar, more accessible way.
Hey everyone, sorry it’s been a while since I’ve written anything. I’m getting back to regular posting now I promise. Anyway, I wanted to make a list of five things people with disabilities face as obstacles in their daily lives. Then I thought that would be too much of a downer, so I wanted to make another list of five things that people may like about their disabilities. I ended up deciding to put both in one post. I would like everyone to comment on this post, whether you have a disability or not, what some obstacles or challenges that you face? Is there anything you like about the things others may see as hard in your life?
One more thing: the following lists are all my own. Everyone is different and I’m not trying to make any assumptions about anyone else’s life.
Okay, onto the lists!
Hard Parts of My Disability
- Having to depend on others for absolutely everything – personal hygiene, eating, and any other aspect of daily living you can think of.
2. Having to meticulously plan every aspect of my life.
3. Having to fight for people to see me as a human being and not just as a person with a disability.
4. The lack of accessibility in the world not only physically, but intellectually as well. For example, people’s attitude towards folks with disabilities and their understanding or education. Please remember to always ask us about ourselves or those around us if we need assistance communicating our own thoughts or feelings.
5. The lack of resources and funding put it in place for those living with disabilities and educational opportunities provided to learn about disability.
I would like to end this post on positive note, so let’s flip those five things I just talked about into something a little more upbeat. Again, these are solely my thoughts.
- Having to depend on others for absolutely everything – personal hygiene, eating, and any other aspect of daily living you can think of.
In my personal experience, having help with activities of daily living is all I’ve ever known so it doesn’t bother too much. In can get annoying, especially when there’s new people that don’t necessarily know me or my needs. Other than that, though, it’s totally fine. Despite the fact that I consistently depend on others to get through my day, it doesn’t stop me from living a fulfilling life.
2. Having to meticulously plan every aspect of my life.
I consider myself a definite extrovert. I am very social; I love to hang out with friends and have a great time. As with the previous paragraph, planning my life seven days in advance doesn’t bother me much because it’s all I know. For my friends who don’t use wheelchairs, on the other hand, it can sometimes be hard to understand the reasoning for planning so much. That’s just the nature of disability – plan, plan, plan for everything. Everything from what you’re going to eat or what you’re going to wear; you never know who is going to be your caregiver each day. On the off-chance I get a new caregiver on any given day, it’s easier to teach them my routine if it’s planned out.
3. Having to fight for people to see me as a human being and not just as a person with a disability.
Having a disability doesn’t change anything about your humanity; it just adds little bit more logistics and planning. like for me as a young woman who loves to get dressed up and look good it can be hard to trust someone new who doesn’t know my morning routine, but that’s just another gamble I have to take each morning. I have to say for the most part, people do pretty well. People think I have my own personal make up artist and hairstylist, but really I don’t. If I won the lottery, sure I would, but the odds of that are pretty slim. the most part I believe that’s beautiful sing me as kelsey end not my diagnosis
4. The lack of accessibility in the world not only physically, but intellectually as well.
It can be disappointing to not be able to participate in recreational activities if I don’t have a way to get there or if the activity itself is not accessible to me physically or intellectually. This definitely plays a significant role in my social life. I’m not able to go out as much as I’d like, but I am fortunate that I can go out a little bit. I just have to put on a little bit more gear on like a mask and use hand sanitizer but it is what it is for now. Myself and other folks with disabilities will adapt to this world just as we do every day of our lives.
5. The lack of resources and funding put it in place for those living with disabilities and educational opportunities provided to learn about disability.
I’m very thankful for what I have and what I have been given, but I strongly believe there needs to be more funding and resources put forward for those living disabilities (and for those who work alongside us to make our lives easier). Without resources in funding we cannot go far. I would like to thank those people who dedicate the time and knowledge to people with varying abilities as well as the people in my life that have given me so much for 27 years. I don’t know how to thank them, but thank you to all of the people still working in this crazy pandemic world.
Please feel free to write your comments and curiosities about me or my life. Trust me, I don’t mind. Stay safe out there everyone!
So, the other day I got an email from Spinal Cord Injury Saskatchewan. My Client Service Coordinator forwarded it from the engineering department at the U of R. A group of students were working on wheelchair design for their final Master’s project. They were looking for the assistance of those that actually used wheelchairs. I was surprised and impressed by this because usually, at least in my experience, people studying disability (equipment, devices or otherwise) tend to get their knowledge from textbooks and have no desire to take it past that. So, of course I was happy to help.
Today I finally got a chance to meet with the students and explain my experiences in daily life (particularly the use of my wheelchair throughout the day). I told them what features I would want in an ideal wheelchair. These included enhanced tilting features, a mount for an iPad/laptop, and a joystick mount that I could actually manipulate given my limited motor function. I also told them I would like to see these types of features covered SAIL rather than be payed for out of pocket. The average family that includes a person with a disability cannot afford these luxuries.
In any event, I’m looking forward to continuing to work with these students and am excited to see the final product.
So guys, guess what? I got to go on my first adventure out in public since Covid became a thing. Yay! Only, like most things in my life, it didn’t quite go as planned.
Last week (now the Tuesday before last because my editor didn’t post this on time), I was supposed to go to a meeting for the SHA Patient/Family Advisory. I quite enjoy these meetings. The conversations are interesting and, besides, I hadn’t been out in a while so I was excited. So, I get there – all excited for whatever the topic of the night may be – only to get some rather odd looks from the staff that greeted me. They asked what I was doing there. Figuring they were just making conversation, I told them about the meeting. They exchanged a glance and then looked back at me.
“That meeting is actually next week, Kelsey”.
Oh…..lovely. Luckily Covid is a thing so I could get a bus back home within 20 mins, but I’m not always that fortunate. If I was able-bodied, I could just turn around and walk out the door-no big deal. However, my disability means that even something as simple as mistaking a date gets complicated. I have to wait for somebody to come “rescue” me for lack of a better word. It’s not only annoying for me, but it’s inconvenient to whoever just dropped me off. Thankfully it doesn’t happen very often.
Question of the day: If you’re able-bodied and were to become disabled, what would be something you may find yourself noticing to be inconvenient? If you are disabled, what little everyday inconveniences would magically disappear if you were to become able-bodied?
This is not the post I planned on writing today; I wanted to write something about disability and employment. However, other adventures came up so…. here we are.
Yesterday I decided I was going for a little bit of a wander down the sidewalk seeing as I can’t really go much farther than that with this whole virus thing going on. Anyway, I was rolling on my merry way when all of the sudden my tire hit a crack in the pavement. Thankfully it wasn’t very big and nothing happened, but it did get me thinking.
I realized just how reliant on technology I am. See, I happened to have my phone on me that day. Siri was having some sort of issue which meant my phone was more or less useless to me anyway since I do everything by voice. However, having it fixed also meant that, had I actually flipped backwards on that curb like I thought I might, I would have no way to call for rescue.
This type of problem extends into many different areas of my life as well. Say the WiFi goes out and I can’t use Alexa. There would be the normal annoyances of not being able to listen to music, listen to books, play games, etc.; my disability adds an extra layer to all of that, though. Having no WiFi and no access to Alexa would also mean that I couldn’t turn my lights on or lock the door independently. That could very easily turn into a safety issue.
That struggle goes beyond typical technology, though. I also have to worry about equipment specific to my disability as well. If the power were to go out, I better hope at the very least that my wheelchair is charged so I can move around; I wouldn’t have access to my lift to help me into the shower or to bed. Not to mention even if I were able to get into bed, I would not be able to adjust it to a comfortable position because the remote wouldn’t work. It’s scary to be that level of reliant on electronics that can and do easily fail. So, in order to make it less scary we come up with backup plans.
Shaylee, for example, has told me before that she has a myriad of backup plans. Everything she does on her laptop, she can do on her phone so she’s fine as long as they both don’t crash at the same time. Power goes out, she’ll plug her phone into her chair so that she has a way to contact people. I could go on, but you get the idea.
Of course, there are some situations you just can’t plan for. The settings on Shaylee’s chair are rather complicated. Even after two years, there are still times she messes something up. One of those times occurred the other day (and is actually what inspired this post). The mishap left her unable to drive her chair for a few minutes until she figured out what she had done. It was not her finest hour.
My point in telling you all this is that things that are seen as an inconvenience to most people can throw off a disabled person’s entire way of functioning. I chose the driveway and power outage examples because those are pretty major. However, something as simple as a lack of ramp or a door that’s too tiny can throw off my plans for the day. One thing goes wrong and suddenly I’m stuck. This pretty much forces me to be two steps ahead of everyone at all times. Even that, as the example with Shaylee’s chair shows, sometimes isn’t enough. We can’t outsmart everything, but it would be nice if we didn’t have to outsmart everything. If the world begins to become more accessible, people with disabilities could just live their lives instead of worrying about logistics.
My question for the day is this: what’s something that throws off your daily routine? How do you handle it?
I look forward to seeing your answers!
Today I wanted to talk about self-image. I see myself as a very capable, creative, ambitious young woman. Every single day I wake up and adapt to the world around me; I do very well at that if I do say so myself. One thing that does set me apart from the rest of the world at times, though, is the ability to process or make decisions. Sometimes deciding what activity I would like to do or what the answer is to a particular question can be very tiring and time consuming. Friends and others helping me try to understand how my brain thinks/processes information. It doesn’t always go well – why didn’t you get that joke? Why don’t you know that?
Truth is, I don’t really have an answer for them. Even I ask myself why can’t I figure out the right course of action for a simple task or concepts. Scientific processes, for example, really throw me off. Same thing goes for mathematics in school. I was never good at math and I always knew that, but the teachers and the people supporting me through math class didn’t understand what I wasn’t getting and would move on to the next concept quicker than they should have.
There’s so many words that I could use to describe my cognitive impairment. Sometimes it feels like my brain is on dial up and I can’t figure out what to do or how to write something; it feels like a puzzle that won’t fit together for a very long time and sometimes it never connects (until somebody points out what would be the obvious for them). That is frustrating as a 27-year-old. There have been times that my brain reverts back to childhood or the actions of the child which is hard because people view that as a big turn off. I’ve had people say “oh you don’t know what I meant, let’s move on” or, “she doesn’t understand so she doesn’t need to know”. Sometimes I do take longer to process or understand information, but that does not mean I need to be excluded from a conversation; that just ends in me feeling very left out. If I don’t know how to respond to a joke or how to answer a question it’s just because it takes me forever and a day to figure out the answer. I believe that a cognitive impairment is something that is a barrier to understanding the world around me. I can’t speak for other folks with impairments, but I enjoy helping them and helping those around them understand what they are trying to communicate.
Question of the day: What is something you will just never understand no matter how hard you try? Comment below!
Sorry for the delay in posting today. I’m out at the farm again this weekend and am having so much fun out there that a topic didn’t pop into my head right away. Anyway, after some deliberation, I have decided I want to talk about technology today.
Throughout this pandemic, we’ve all gotten much more reliant on technology. We have to use Zoom for meetings, FaceTime with friends, stream movies on Netflix, etc. For a person with a disability, though, this honestly isn’t much of a change from regular life. Technology helps me get through my day-every day.
I depend on technology for pretty much everything. Some would even consider my electric wheelchair to be technology, but today I’ll be talking about more standard technology (my phone, tablet, and Echo).
Let’s start with the phone/iPad. I use both of these things to make calls, send texts or emails, write these blog posts, do schoolwork, watch movies, etc. Thankfully, accessibility settings within Apple products allow me to do this all with my voice. In addition, I have recently received an Echo Dot. “Alexa” can also send messages, make calls, and play games. Perhaps what I use her the most for, though, is to operate my lights. After installing some smart bulbs and doing a little programming, I can now turn my lights on by saying “Alexa, lights on” To turn them off, I say the opposite. It allows for a new level of independence, which is something I’m always striving for.
I also wanted Shaylee (my editor) to pop in for this post because she uses technology in a bit of a different way than me and I thought a different perspective would be interesting. Take it away Shaylee.
My day to day tech use is pretty standard. I don’t tend to use voice control (unless I’m taking pictures because holding the phone at the right angle while trying to hit buttons is hard). I do use Assistive Touch on my to assist with two-handed functions such as a screenshot or gestures that require multiple fingers. I guess the only other specific program I can talk about is Remote Mouse and similar applications. These programs allow your phone to act as a touchpad and keyboard for a laptop as long as both are on the same WiFi network. I typically use this when I need to reposition my chair (tilt or stand) in a way that does not allow me to reach the keyboard. Other than that, I suppose I just ensure adaptability and portability with my technology. Everything I do on my laptop can be done on my phone and , for the most part, vice versa. I do prefer doing most things from my laptop, but it is heavy so if I don’t have to carry it around, I’m not going to. Besides, sometimes simple editing or emails is just faster on a phone.
Now that you know a little bit about how technology makes our lives easier, what is a go-to feature that does the same for you? Let me know!
Today I wanted to talk about something really important for me as someone with a disability: community. As a disabled person, there is not a lot of places I completely fit in (both metaphorically and literally). In 90% of the places I go, I’m changing something about myself or the environment around me to make it work. Portable ramps, different wheelchairs, bringing extra people along, etc. There is one place I don’t have to do any of that, though. That place is theater practice with Listen to Dis Voice.
Funnily enough, Listen to Dis released a webisode today where the participants discussed the exact same thing. They called our theater group a community, a place for disabled to find their voice, and a family. I could not agree more. I’ll leave the link to the full webisode here in case you’re interested.
My question for you today is where do you guys find your community? Where is that place you completely fit in? Let me know in the comments below and I’ll talk to you tomorrow.
Look at me being consistent. I’m coming back at you with another question. Think about your favorite place to go for fun (arcade, sports arena, park, etc.) and discuss how accessible it is. Is there a ramp? Automatic doors? An accessible bathroom? Braille signs? No facility is ever perfect, but how well does your favorite stack up? Let me know in the comments below!
So my editor is slacking again. I have another post coming about the farm at some point, but she hasn’t gotten there yet. However, this one has a time limit, so I’m sitting on FaceTime writing it with her so I can make sure it gets out. Why is there a timeline, you ask? Well, yesterday marks the start of National Accessibility Week in Canada.
According to the Government of Canada website, National Accessibility week is a time to, “to celebrate the valuable contributions of Canadians with disabilities” and to “to recognize the efforts of individuals, communities and workplaces that are actively working to remove barriers to accessibility and inclusion” (June 1, 2020, n.p.).
I wanted to find a way to acknowledge this occasion and I decided the best way to do that was to get you guys thinking. Every day this week I’ll be asking you guys a question related to some aspect of disability. Feel free to post your answers in the comments and get a discussion going. Today’s question is:
What is something you do everyday that would have to be adapted if you were to become disabled. Alternatively, if you already have a disability, what sort of adaptations do you do automatically at this point that it would be weird to not have to do if you suddenly were not disabled?
Hi everyone, how are you holding up? Can you tell my editor is back? Always has to check in before getting to the point.
Anyway, it’s been a long haul with Covid 19 for everyone. It keeps getting longer, but I’ve tried to make the best of it by having zoom calls with the Astonished crew, going to the farm to visit the chickens/ducks and visiting with family. As always, I’m getting spoiled with many treats. Favorite selections include: cookies, cinnamon buns, and popcorn twists. Oh, and lots of cheese buns! Eating is the only thing that is going to get me through this crazy time. I feel sorry for the elderly as well as those with disabilities; I am very social person so staying at home is not the easiest thing in the world, but lots of blog writing, zoom calls, and FaceTime chats will get me through this chaos. I will also be trying to upload some more episodes of my podcast “Less Inspiration; More Conversation on Sound Cloud. Check out episode one in the meantime if you haven’t already. Also, please to share what you have been up to since the start of Covid 19. Let me know what kind of things you would like to hear about on my upcoming podcast episodes as well. Stay tuned for more blog post and (hopefully) podcast episodes. Here is what my mom and I have been up to lately-it’s certainly keeping us busy!
My passion is to do public speaking. This has been halted due to the pandemic, but I’m making the best of it by blogging and learning new things (such as using Instagram).
Check out my account, @lookingbeyondlabels on Instagram!
We are living in such a different world. I am stuck in the house trying to find things to do. There is only so much Netflix I can watch. What have you been doing to pass the time in this world of uncertainty?
Online shopping is going to become my best friend until COVID is over!
The only thing helping me through this is food, eating lots of good food! So much eating to be done. What are your favourite recipes getting you through isolation?
Stupid. Unable. “So sorry for you”. These are the things I imagine people are thinking when they look at me. All of these thoughts are common misconceptions. If you take a moment to look beyond my physical diagnosis, though, you’ll see that I have goals and aspirations just like everyone else. However, people don’t often take that moment; they choose to define me by labels instead because it’s easier. It’s easier to make a snap judgement based on a label than get to know me as a person.
Someone once said, “labels are for jars, not people”. The world is so pre-occupied by difference that it doesn’t bother recognizing what we are able to as people. Thankfully, The Other Ordinary (Listen to ‘Dis) takes a different approach.
The Other Ordinary is an inclusive theatre company for individuals of varying abilities. I never thought I would be in theatre, but I was approached by a professor at the University of Regina named Kathleen Irwin who started a class because a friend of mine in a wheelchair wanted to act and was told she had no opportunities. Our assignment was to get together and do writing and at the end make a show out of it for the U of R and it turned into a theatre company.
The labels didn’t matter and they still don’t. It’s about what we can do. Our skills and not our labels.
So today, you’re not going to hear from me. You’re going to hear some more from my friend, and editor, Shaylee. My next post is going to be about our most recent hang out together, but she seemed to have something on her mind so I gave her permission to run with it:
￼Yeah, I guess I kinda did have something on my mind. Kelsey and I were at theater group a few weeks ago. It was the the second time I had gone and the first time I’d met the director (she was sick the week prior). We spent the evening working on sounding. I thought it was going to be a walk in the park considering I spent all of high school in choir and still sing quite a bit. Turns out, I was wrong. Apparently success in theater means unlearning everything I’d learned as a singer.
Don’t get me wrong, our director complimented my singing as we were running scales. I was just too technical-too focused on showing others I was good and proving I belonged there. That is until in one particular exercise, she had us individually try and match both the pitch and “feeling” of a note. The notes she played were low, dark and rather scary so when it got to be my turn, I attempted to mimic that. In the beginning my voice cracked, but I saved it by the end.
“YES!” our director cried, “That first part was great. But then the singer in you wanted to fix it. Don’t do that. Let yourself be messy and imperfect.”
So after hearing that (and a few more instructions involving a dinosaur tail) I tried again. The sound that came out of mouth was like nothing I’d ever heard before and it felt really cool!
After things had wrapped up for the night, I kept replaying that moment in my head. Only once I let go and stopped caring about being good did I stop being nervous and start having fun. I realized I needed to bring that attitude to more areas of my life, particularly as a disabled person. I need to start accepting my body the imperfect thing that it is. You would think having been born with my disability, I would’ve done that a long time ago, but nope. I actively try and avoid doing anything that draws attention to the fact that I’m in a chair and try to function as “normally” as possible.
I’ve decided it’s time to start flipping the script and doing the opposite. It’s time to stop viewing my body and the way it functions as an inconvenience to others, time to stop apologizing for taking up space, time to stop avoiding clothes I like the style of because they might not look perfect sitting down-looking at you crop tops. It’s time I just generally stop caring what other people think and start embracing my body for what it is: perfectly imperfect. The rest will fall into place exactly as it’s meant to.
So, going off of the vein of the last post, this is what happens when my editor and I both decide to take a night off and have a little fun. Because it’s Saturday night and we can. Enjoy.
Yeah no I got it though what is it do that one night honestly if you know where it is yeah cool no that’s nice will do because I am do you take it to school good so just put one in there and then you gay you can grab it are you going to get away without your mom now because there is no hello I have it well I have a phone plus I need it for school we’re going on there for eight hours I need help after four hours so well what time actually that’s OK my kids got to really know me was like I was in the corner one time no like chelsea you asked me to give you a candy what was it that in a like oh it’s all good enjoy walks over is it is it when I forgive you yeah I was like oh no real do you know where you’re like that that’s what I was first started oh I have what you have to do is play around with the dog sitters do you tell you find like if you go to the doctor they prescribe it for you the give youa 1st go to dog that you’re allowed to have birthday so until you figure that out but it’s up to you to figure out how much you need what is this is this who is this this is Roman the whole thing who is this is this who’s with you obviously. I am over guys are just tight always got lost got lost and then people can just read that whatever yeah I took whatever is there I took I took whatever and then hey there could be visiting I talked talked yeah that could be that the title OK caroline you can you can title that is the cause i’m just going into some robot and then I will put it in i’ll put it in drive three kids it’s quite hilarious I don’t know everything I don’t think voice control is not working it honestly is the best thing no but it’s like getting everything we’re word for word burger by your FaceTime call no I’m pretty sure this is like when we’re done with what go to my brain right now so oh good florida oh that’s not good search now I tried one of those dream donuts strawberry shortcake it’s not all that I thought it was I can’t I have a general idea OK I am losing is that when I visit I am losing a kick your net oh really yeah what is it like a legit kick your net yes OK so I like that one because I like I don’t like hell because I envisioned I kick your net luca no yeah sensitive sour cream cream glazed doughnut with icy yeah what a kick you right night night of the week yes and the I didn’t want to say I didn’t like it to my brother because he wanted to do what is the final because the first the first one didn’t have them so she went to the other one OK oh my god is this who is this yeah yeah I don’t know it’s so weird hi did you go I don’t know you thought the one close to his words oh you don’t see nothing is that the one because there are your family that would lose yeah I was like you I don’t know your formula dude seriously how much do you know is over lucky you but like I am trying to say is if it weren’t so I don’t reveal like straight up what are your name like doing yeah it’s more and talk more then why are you there later if someone leaves questions who doesn’t know me then it’s like OK so cancel answer me this thing so single it’s a bunch of questions yeah hello how does he do that besides his YouTube channel instagram go on Instagram like anytime you know the Q&A leave me any questions and you might be in can you so I could do I am ask at the end of it ask me any questions you want yeah at the end of this one yeah because I’m pretty sure where is the where do I need they’re going to be like OK let’s go to recruit you sleep if I haven’t but I’m on my medication I don’t know what does leaving a silly question you might get into the thing is is that could’ve say instead of straight out blaming blaming the meds no you got to make it going to make them think can you play if you if you read this with mira reviewing everything are you didn’t know me what would you assume not even if you didn’t know that or I could we could also title it with all are there is hope wake up wake up without my thorough no word the 1stone unplug bold and that was I tap yeah or no today was no something oh is that I said that I liked I remembered what are young exactly what it was it was something I like when I said do you want to begin a hoe I have the mechanics no my brain does want to do today because but I don’t hi Ray knows what to do but I don’t have the body mechanics like my feet oh yeah usually don’t feel any leak aaliyah leaving the movie OK weird interesting it’s like stand on your feet what cologne what is like the new one yeah love you over condition of sleep is like your answer on fire yes oh I don’t know like our our brains know yeah our brains know it for the body never can respond i’m just gonna I need to let Homecare know when I want them OK i’m I have to come back quickly well I don’t want to start this because you can move you interesting post where are you I was with something so again “thing instead of a current symptoms OK so I’ll call you in a second OK cool let me read my things and for some reason it’s not coming through on my iPad so I’ll call you like in second OK it’s kind of annoying both of you no me a text saying so I was like can you text me when I fell sleep the first time overall sleep for like hello Anna half awesome👌 awesome is like OK what how chocolate world did you eat like I don’t know I said I don’t know is fun she’s like well I don’t I don’t care about it are you going to get out one time I fell asleep with a full bowl of food didn’t even guard up love you I didn’t go sweet aiden no to let them know it’s the day of yeah OK oh i’ll call you back I just keep this going in the well it will make it will make no sense but that’s the new one hey that’s that I could do making no sense yeah this is this is making no sense is that OK this is the nose then suppose it was sent zoom and then right hello let me know if you have any questions yes but he always saying and also has it what’s it called facebook thing I asked and there’s a setting for it can I don’t figure it out just know what the email was what’s the email because I can use it right no but did you try anymore every spelling of butter creamy I can think of OK well try do you WN OK the Burger King me a Hotmail.com OK cool maybe that’s why OK OK well I am all for you guys two minutes OK because I am story of the word last night photo can I call you like 10 minutes OK that’ll give me time tear I will figure out the messages yeah are you just gonna keep it on OK Sia hi I don’t know where I’ll be without you no no I don’t know don’t know LOL I have no idea yeah I have no idea where are they risotto little please canthi I don’t know I don’t know where I would be where is that on a little piece I want candy why Wawa why I don’t like you well you do love you too fly me to the moon that’s the least you could do yes love you too do you have a moment to do the moon boo boo boo boom boom yeah answer your name is your name you’ll never forget cousy oh no I won’t forget here yeah no incentives folks no intent in the law just a random night who so much fun beginning who is this who is this so do you know who it 00 this craziness yeah I will this craziness yeah what is this like the box truck words you never quite know what it’s going to be up there on my way but that’s how I want to live every day every day isn’t there a day per for me it’s new in a different perspective in terms of do you know oh things like how’s your body feeling today aunt that determines what you’re up to really love always where are you girl who you with i’m hoping to spend a ton that could be having see you see someone new every morning or hoping to see someone new at me to bed or you get me up in the morning sup big money people métis regards it with the Bing you about how many how much energy do I have delivered it for me my disability I think the world of energy from me singable to do things what being a simple is feeding her self for approximately half an hour do you are thriving for the independence but also you know they are going to be tired after but you don’t even care because you don’t have someone shoving food in your mouth you don’t even care because you don’t have to wait for that day the food you can I can get it for myself something something the general population they do without thinking about eating drinking sleeping operating a cell phone who is that all things did I need help with by no means is this post trying to gain a level of pity or sympathy believe me i’m not here on this one get that or to be your inspiration you don’t I don’t drive to show you debt I have a disability but I’m not broke it I tried to show you debt interdependence it’s something greater than the average person might think for those that does those days we are away solely on interdependence each and every day to navigate the world discover new things about her self serves usually so discovery happens in your teenage years but for me it didn’t happen until I was at least 20 years old discovering wearing make up putting on clothes good fit my body i’m feeling comfortable doing so doing your hair other ways besides brushing it what are you into and ponytail doing a make up so you have beautiful eyes instead of just leaving the house that’s not to say I don’t value myself as a person but it took me a while to learn and grow and to realize it’s OK if you have my body it’s OK to be comfortable your own skin this discovery started when I was introduced to the other ordinary theater company and my involvement with listen to DIS voice theater programming that’s what it means me more comfortable with well body self-awareness self worth so we can see motivation to make decisions for myself searches what clothes I wanted to wear what make up I want to put on what hairstyle and really speaking what sing in speaking to the inner self knowing my limitations knowing what I purposely could handle how many spoons by the way answer my way of measuring energy level or stamina that’s my own energy levels and stamina because there are days I am stealing spoons of tomorrow to get through one big day and trust me it’s all worth it because I am speaking about myself end i’m not afraid this speakable my love challenges and how they impact me i’m a daily basis living a cerebral palsy is definitely unique journey difference for everyone but for me it means that the messages oh what my body should be doing get forgotten about I want my body shouldn’t be doing gets thought about like oh flood your legs but you want to move them but you can’t that’s the case for me anyway move your arm up and down well sometimes it’s hard to do that what days like today are so much different wide-body it’s telling my brain is telling my body the correct way do you stand up the correct way do you lay down(Way to hold a spoon although I don’t have the body mechanics to stand up to get on my feet I want grown grab my favorite snack of a fruit rollup carry-on or do you something like do my own hair I wouldn’t say depending on people it’s easy but I look at it like this it’s it’s a surprise every day you never quite know what you’re a hair is going to look like when you have different people TV you are fine motor skills NYX doing all the things that you wish or you could do it and drive it you can do like just simply stand up right now I have the motion or the ideas but not the motions definitely don’t have the motions faceTime Shaylee making a FaceTime call to Shaylee oh shit do I have any messages shaylee said can you so my phone at like 11% want to reply yes what do you want to say OK are you going to forget it here’s your message ready to send it yes OK it’s sent do I have any messages shaylee said still in the bathroom phone at 7% now want to reply no OK no other messages one of those nights if you have any questions for me please comment on this post any questions regarding why myself or anything about me I am open ask me break those curiosity is ordered beliefs or maybe thoughts you may have van me just ask questions asking is easier then supreme any questions at all i’m not your friend and I will respond tourism in increments as I can and questions you might wink well it’s do you envision awesome over question but open there’s an honesty or one of the best things that can truly give you glimpse of persons life so tonight I really want you do you think of those questions or curiosities and post them by commenting on this post four posting them on my Facebook page don’t disable enable thanks send please note there is no edits on this post it’s just one of those nights
So I wasn’t planning on writing anything today, but then I was talking with my friend (and editor) Shaylee and she told me she had an idea. She told me how she was thinking about how technology has, and I’m censoring a bit here, saved her butt today. Technology allowed her to video chat into class so she wouldn’t miss any important material despite the -40 degree weather. She was also able to find a copy of her book for book club on Kindle so she could follow along without a physical copy. She figured if technology was that helpful for her on any given day, it must be even more useful to the one with very little hand function in the friendship and thought it would be a cool topic to write about.
Shaylee was right; technology allows me to do many things I could not otherwise do. However, I have also come to realize that technology is a blessing and a curse. Technology can be annoying at the best of times, but when you use voice control to operate your devices, things get even more interesting. For your reading pleasure, here is Exhibit A of that issue. This is what happens when you are on FaceTime with your phone and trying to send a screenshot with another device. The other device simply picks up (or tries to pick up) everything you say on FaceTime and hilarious texts ensue. Enjoy!
Yeah I got it finally yay yeah no but people person will bring girls take that long for us to do something no not at all when I did this yes the present where here because I was awesome random things in the league looking at me like I don’t want to bug you edit that’s kind of the whole idea is to offend oh my God I think you should do the steaks
Cute who is this who is this who is this it’s like for you to go look what clothes do you people I work with yeah hey can you do put that in the way I don’t have words for the bumpers but something along the lines of like relying on technology so are you sleeping.
As you can see, voice control is a wonderful invention, but can be a little hit and miss. For those of you that can easily fix typos yourself, it’d be nothing more than a minor annoyance. For me, it can be a huge frustration. Keep that in mind the next time you get a text/email from me. If something sounds weird, it’s probably because I got frustrated and gave up.
You guys have probably figured out by now that I am a very active person, which means I like to go out and do things like any 26-year old woman would. In saying that, I will point out that my level of activity is probably pretty high for someone with a disability as severe as mine, but in no way, shape, or form is this to say people with disabilities do not usually have social lives at all. I just think I am extremely busy and active in my community between advocating for people disabilities, going to the movies, visits to long-term care facilities, going to university, etc. I’m still trying to make time for more movies, time for going to the hair salon, and the list goes on….
Anyway, just the other day I had a minor surgery related to my CP (which I apparently woke up from hangry and craving a breakfast sandwich so…). Therefore, my very active social life is currently on hold; the only things keeping me occupied at this moment in time are Netflix, food, and lots of good friends coming over to paint my nails and watch a bit of the aforementioned Netflix shows or bring me a box of favourite treats. That’s the best part of the whole thing; I love being surrounded by friends, but I am really wanting to go back to my active self. Just last night my best friend came over there to paint my nails. One of the things she said to me before she left was: “You will get back on your feet soon”.
Then, realizing her minor blunder, she said “Wait, you will get back on your wheels soon”.
Exactly. There’s no chance I’m ever getting back on my feet, but I will be back on my wheels and back to myself in no time. I can’t wait to get back into my usual routine and I hope that, whatever you guys are going through, you’re able to keep some of your routine-whatever that looks like. For me, it’s going to mean keeping up these posts from bed. Let me know in the comments if there’s anything you would like to write about and I’ll see you soon!
So, my editor has procrastinated long enough that it is no longer 2019. Happy New Year everyone! Let’s take a little trip back in time for this post….
Last Monday was my last official visit to Harbour Landing Village for 2019 and it was certainly more interesting than the average visit. To help me the tell the story, allow me to introduce my friend (and editor of this blog), Shaylee.
Hey, hi 👋 this is the aforementioned friend jumping in. Kelsey told me to tell you guys how we met before story time starts. Long story short, we met in an airport on the way to a medical appointment in Montreal, discovered we lived in the same area, and the rest is history.
Okay, back to story time we go. I came over to visit Shaylee one more time before she ditched for Christmas break. We came up to her apartment to get rid of my jacket and then decided it was time to get food. You would think getting food is an easy task; not so much when your friend is also disabled and in a wheelchair. Actually, before we even got to the food, I saw cherry Pepsi being used as a doorstop and immediately wanted it. So, naturally, I asked for some. But I couldn’t get it myself so Shaylee had to.
My hands were pretty full at that moment, but who was I deny a cherry Pepsi to a guest? So, I sent her out into the hallway so I could get around her chair to the box, set my stuff on her tray (almost spilling my water in the process) and got the Pepsi. Kelsey, for her part, did not question the being banished to a hallway.
That whole process took about a half an hour￼ and then we finally made it to the restaurant downstairs. Nothing to eventful happened initially. Some lovely gentlemen moved the chairs for us at our chosen table and we got settled. This is where things started to get a little different from the typical dinner date between friends. My vision is not the greatest on the planet and I don’t follow written words too well, so I had Shaylee read the menu to me. This is pretty standard practice and Shaylee was used to it. Actually, she was used to the whole process: reading the menu, helping me eat/drink, cleaning up after, picking up anything that drops, etc.
Yeah, exactly. It’s just second nature at this point and I’ve found the balance being a “caregiver” and being a friend. I feel weird even saying the word caregiver because doing that stuff is just how hanging out with Kelsey works. She can’t move much and I can (ish) so I do. We talk and catch up like normal friends and all the physical help just sort of happens without us thinking about it. That is, until other people notice it.
For example, as we were eating, the front desk lady working that night (whose also become a friend of mine) came over to chat. As we were talking I popped a bite of cheesecake into Kelsey’s mouth as I had been doing for the past, like, ten minutes. I don’t remember exactly what the front desk lady’s comment was, but it was something along the lines of, “that’s really awesome that you help her out like that….so sweet!”. Then she went into how hard it must be and such. Now, I can’t speak for Kelsey because we’re in different cities as I write this, but that rubbed me the wrong way. Is helping out hard sometimes? Sure. Actually it was that night. I was in a fair bit of pain that night thanks to my own disability, but I knew it was nothing serious and I wanted to have fun with Kelsey so I made it happen. It was definitely worth it and not at all something I need to be complemented on. Although I will say that me functioning through pain brings up something else I’ve been thinking about lately: the change in roles that I experience when hanging out with Kelsey.
In my every day life, I am a person that receives care. People help me get up, get dressed, do my hair, cook for me, etc. When I come home for holidays, my parents like to joke that I am high-maintenance because I do rely on them so much. Yet, when I am with Kelsey, I become the one doing the care-giving. Suddenly I am the one capable of doing all of the things I would normally rely on an able-bodied person for. It’s an interesting identity switch that still mildly baffles me sometimes. It can be a welcome change, though, even if I pay for it the next day.
As you can see, being in a friendship where both people are disabled can be a little weird. Other people can make strange comments and you can even surprise yourself sometimes. That said, friendships with a person who has a disability are just friendships. Shaylee and I treat each other as we would any other friend because we are like any other friend. Keep that in mind as we head into the new year. If you want to start a friendship with someone that has a disability, talk/act the same way you would with anybody else. It will be much appreciated.
I don’t know about everyone else, but I’m ready for the holiday season. I’ve been sampling Christmas baking and anticipating the fun I will be having on Christmas Day. The most important thing about Christmas for me, though, is spending time with family and giving back to others who may not be as fortunate.
Of course, as wonderful as the Christmas season is for me, my experience of it is still affected by disability. There are things that can be done to make life easier, though. Here are a few tips to keep in mind when planning Christmas for those with disabilities:
1. Please use gift bags instead of wrapping paper
For those of us who may experience limited motor function, wrapping paper may be a hindrance to our Christmas enjoyment. Wrapping paper takes us twice as long to open-and some of us may not be able to do it at all. Sure, other people could open things for us, but where’s the fun in that? Besides, relying on others to open our gifts takes away our independence. Opening up your own gifts is something most people take for granted, but that level of casual independence is something people with disabilities long for. Gift bags make that goal just a bit easier and allow us to enjoy the thrill of opening a present just like everyone else.
2. Please have any Christmas festivities somewhere accessible if possible
I love a good Christmas party as much as the next girl does, but if the venue is not accessible, I won’t be going. The same thing applies for others with disabilities. More often than not, house parties are not our friend. Try to have festivities in a venue with appropriate access (ramps, elevators, accessible washrooms, etc.) and plenty of space to allow us to move freely. Oh, and place decorations strategically if you don’t want them being hit by wheelchairs or walkers.
3. Please choose practical and useful gifts that will suit our needs
As cute as that little notepad/gel pen set covered in fairies and sparkles may be, it could be a disappointing gift for someone to get if they are incapable of writing. Take the time to really tailor the gift to the person you’re giving it to. Food items, clothing ,or just give cards are all good options. You could also go for sensory items or a good smelling soap/candle. These suggestions are just ideas. They may not work for everyone depending on preferences and level of disability. Again, it’s important to take the time to consider the person receiving the gift. We’ll appreciate a thoughtful and useful gift much more than whatever latest trend is on the shelves. If you’re not sure what it is that we would like, just ask.
Hopefully this post gave you some ideas for better including disabled friends or family in Christmas festivities. Feel free to comment your own suggestions below. I wish you all a Merry Christmas (if you celebrate) and a Happy New Year!
Today I spent the day getting ready for my first Christmas party of the 2019 holiday season. Check out this amazing hairstyle done by Wanda at Studio 3 & Co. at Harbour Landing Village!￼ I left the salon feeling beautiful. And, of course, since I can’t leave the Village without one, so I got an apple pie fog ☺️
Yesterday I decided to have a coffee date with a friend of mine-nothing out of my normal. Everything was fine when she first walked in: we were chatting and then things seemed to start going downhill.
In order to understand why things went downhill, you first need to understand that I need help eating. So, a coffee date involves the other person helping me eat or drink. Normally not a problem and, for the first little bit, it wasn’t. And then she said the following: “I think I’m going to eat more leisurely after you leave”.
Uhm…excuse me? That is not okay. Of course, I didn’t say that out loud, but I was definitely thinking it. She made me feel like I was nothing more than a responsibility to her and that sucked.
Although I am disabled, it does not mean that my disability is all of me. I am still a person capable of meaningful friendships. I have gifts, talents, abilities and feelings. To be treated as if none of those things existed and just focus on my disability is not fair; it is not behaviour a true friend would exhibit. A true friend would know that I just need a little extra help and not give it a second thought.
Just the other day I had the opportunity to speak on a panel which aims to advocate for people with disabilities in the arts. We were asked about our own personal experience in the worlds of arts, performance, and theatre. It was a very interesting experience.
The diversity of the panel was impressive. For example, I got to experience a bit of the Deaf community. Watching them communicate so fluidly without words was really neat. Astonished showcased our work in the voice lab (the podcast for me) and crushed it as always.
Despite it being such a great day, I definitely ran out of spoons by the end of it. Meaning I also had a headache. As my headache got worse, I desperately needed meds. Problem being I can’t swallow pills. So, the poor practicum student working with Astonished had to improvise a way to crush them. What did he come up with? A thumbtack. He sat there piercing the defenceless pills to a pulp and mixed them in my drink so I could finally get some relief. Because, of course, nothing in my life can be simple 🙂
Every single day, each one of us wakes up in the morning with the ability to make choices. We can choose what we do with our time: whether we want to get out of bed, what we want to eat, or what book to read. We even choose something as simple as what name other people call us. Having a disability does not change that fact.
￼For individuals with disabilities, there should be no exceptions made for us in terms of making our own choices. Whether that be what food we want to eat, what clothes we want to wear, or how we choose to present ourselves to the world.
One of the only things we don’t have control over is the fact that we have our ￼￼￼￼￼￼￼disabilities. For one reason or another, we have been given our disabilities and are tasked to do the best we can with the limitations we have. ￼In my opinion, that is the only option. We do not have control over our bodies or the situations we have to live through, but that doesn’t mean we can’t add our own personal touches. We should have control over what we want to eat and drink, how we spend our time, where we go, etc. We are normal human beings. Sure, the way we’re forced to conduct our lives isn’t exactly normal (or particularly pleasant some days), but we still think and feel the same way others do. When we ask for help doing something or going somewhere and a person says no because it isn’t convenient/easy for them, it sucks. It takes away our autonomy and forces us into a position where we have to use self-advocacy to fight for something able-bodied people do without a second thought.￼
Please encourage everyone to let everyone make choices – regardless of their disabilities. Everybody communicates differently, but this does not exclude them from the ability to make their own choices. It may be hard for some of us to make a decision on our own and it may take a little bit more time than it would for the average person￼, but we should have a say in what goes on in our lives. Others around us should not be granted automatic permission to dictate our activities based on the ease or convenience of said activities. We need to be allowed to keep our autonomy.￼￼
I was very excited to be a guest speaker in an education classroom at the U of R once again today. Educating people about what it’s like to live with any sort of limitation or life challenge helps me to cope with my own situation.
Of course, I’m not saying that people need some sort of special talk to teach them how to interact with someone like me; I don’t want to make people think that we need to be treated any different because of any challenge we might have. It simply means we use interdependence to navigate our world. Those of us living with any significant disabilities or mobility challenges may depend on others a little bit more than the average person and that’s okay. That is the whole reason why spoon theory, a main part of my talk today, was created.
Spoon theory was created by a woman with Lupus named Christine Miserandino. A friend asked her what it was like to live with the disease and she chose to explain it using spoons. She handed her friend a handful of spoons and said this is your energy for the day. How you use it is up to you. I don’t know how the exact conversation went, but the friend started listing￼￼ off daily activities such as showering, getting dressed, going to work, etc. Christine would take away whatever amount of spoons she felt the activity warranted. Midway through the day, the friend was out of spoons and sat there dumbfounded.
Christine explained that this was every day life for her. She had to weigh everything she did against the amount of energy it would cost. If she went to work, could she also go out with friends? Of course, she could push through and do both but then she would be paying for it the next day. Some days, though, the conversation didn’t even get that far. Some days it took all of her spoons just to get out of bed. She would need help with any other task she wanted to complete. She had to be okay with accepting that help￼.
Many people with disabilities, including myself, have adopted spoon theory as a way of explaining what we go through. Those of you that know me personally know my body doesn’t move much. This means that something as simple as feeding myself takes a lot of spoons. If I choose to spend my energy feeding myself, that’s fine, But I have plenty of other things I would rather devote time and energy to. So, I ask for help. This does not make me (or any other person with a disability) foreign or different from those of you who are able bodied . Let’s face it-we all need people to survive . We all depend on people in one way or another whether it be physically, emotionally, financially or otherwise. We all deserve to be loved and cared for just the same as anyone else.
I challenge and encourage everyone to treat disabled people as people instead of diagnoses or pieces of paper. We still deserve to be treated just as any other human being, limitations or not￼￼￼￼￼￼.
I’m finally learned how to post some of my podcast of the songs for those Who may or may not know I am finally ready to share some of my episodes of my podcast called less inspiration more conversation which simply means please don’t View our disabilities is some kind of inspirational musical because disabilities are obtained without choice therefore there is nothing inspirational about them what is inspirational who is the people who have disabilities and what they have to offer the world inside and out so my message for this post is to look beyond medical diagnoses is to realize there is a living breathing feeling human being that has valuable contributions to make the society we are not interested in your pity or sympathy we are comfortable in our skin!!
Today we waited half an hour for a one minute elevator ride. One elevator was broken therefore we waited twice as long for the one elevator that was operational. The vast number of people who may have been using the elevator may have been using it for convenience. Although I can’t assume invisible disabilities please use the stairs and reserve the elevator for those who absolutely cannot. If I could, I would use the stairs.
Yesterday my friend and I decided to go and check out the new lush store in Ŕeģina it was their grand opening therefore it was so crazy. Like over 100 people in a very confined area people we’re just travelling each other just to get the perfect bath bomb call Ma I was one of those people however I use a wheelchair for mobility therefore it was very hard for me to move around the store without running into all of the bath bombs it was like Bath bomb mania fortunately the staff were very accommodating and moved everyone out of the way so I could navigate their store more successfully I would like to thank them for doing so is it the things that make a difference in my leisure opportunities.￼ One time the same shop till you drop was literal for me my mom and I were in Montreal Quebec for my medical appointments and her room was if I did good at all of my medical appointments without screaming bloody murder this she would take me shopping. This trip was no different than any other afternoon shopping she piled all the bags on my wheelchair my every day push wheelchair as we were going through the elevator door all of the bags got caught and flipped the my realtor backwards all I did was laugh was laugh hysterically. But anyway after yesterday’s shopping trip I decided to go and visit another good friend of mine? When my friend and I arrived at my other friends house she realized she didn’t put on deodorant and had to go and use my brand new body wash to wash her armpits because she was going to see her boyfriend you definitely don’t want to stink in moments like that LOL￼￼￼￼￼￼￼￼￼￼￼￼
For myself today was a day filled with a lot of self-awareness and connection with the inner self. As well as the Millatti to recognize my own impulses as an actress before thisRehearsal and development day I would’ve never thought I could express my feelingsIntricately detailed way and feel safe doing so.One of the things that really stood out for me was individuality was top of mind abilities skills and limitationsI love how the people you had the privilege of working with didn’t have any doubt in our skills or abilities to them we all murdered and everyone’s voice was heard and I loved her there was no mention of Kent or maybe or is that even possible??’s Were definitely nota thing today that’s what I love the most. My question for everyone today is what does humanity mean to my question for everyone today is what does humanity mean to you and what does autonomy mean to you please show your responses on this post be honest please I would love to hear from you?￼￼￼￼￼￼￼￼￼ I would sincerely like to thank all of the people that make this amazing work possible#ListenTo dis Voice community arts organization
I had a fun day filled with Halloween activities today. I started with pumpkin carving with Astonished and then spent the night at The Village with a friend. I enjoyed seeing all the little kids in costumes roaming through the coffee shop.
There was a bit of a snag, though. A little something I have dubbed the Reese’s Pieces Debacle of Halloween 2019 occurred. I was “quality testing” some Reese’s pieces candy but for the life of me could not get them open. My friend couldn’t either-she even tried biting them! Finally a waitress cut them open with some scissors and we continued our fun! Easy to open packaging would have been much appreciated, though. Our hands would have been very grateful for less effort. I hope in future all companies will think of accessible packaging for those with limited motor function. And that my Christmas presents will be easy to tackle 😉 🎃
The picture on the top is my Halloween costume for this year the picture on the bottom where is my Halloween costume last year I better go and finish harvest it’s been a long year but I’m still not done LOL￼
For those of you that may or may not know October is disability awareness employment￼ month, please don’t let our disabilities be centre stage when considering hiring us because we all have differences please don’t let someone’s differences be the deciding factor in whether they can contribute to your company or business because we all have skills talents and abilities and limitations should be the last thing on the list if there are limitations involved a little adaptation and modification goes along way in our daily lives so with that being said please give us a chance we are also contributing members of society and you would be surprised what you can learn just by getting to know us without having perceived perceptions or ideas I strongly encourage you to please give it a try because at the end of the day everybody wins
My day started off at school as usual and went downhill from there. My home care forgot to show up for lunch shift so I had to ask for help. Thanks to two young women at the university I did get fed, though. Next up, a speaking engagement with the Rick Hansen foundation, but getting there was a bit of an adventure. My transportation didn’t know where to go. We did figure it out eventually and I was only a little late. The engagement was well received by the audience and I received many thanks from the audience!
Then it was time for some fun. I came over to see a friend at Harbour Landing Village. We caught up and wrote this post over nachos and Apple Pie Fogs. Yum! All in all it was a good day.
Purchasing my morning coffee in university is always an interesting experience this morning was no different it was like are you able to drink coffee? Are you able to pay for that coffee? Although the cashier was very helpful in getting my coffee I could see the curiosity behind your eyes and the questions that she must’ve heard the sooners my academic advisor came to meet up with me to see if I was OK she immediately assumed she was my helper and my academic advisor corrected her and said I just support Kelsey in classes but I am not her kid care attendant after we left the Tim Hortons my academic advisor said awkward and I said it happens to me all the time please remember everyone that folks with disabilities no matter what that disability maybe we are still people first and we have A lot more going for us then just our disabilities or limitations that’s for sure. How about our talents skills and abilitie🥞🥖🍮s
What a great way to spend an afternoon at the science centre visiting the joy lab, there is no better way to spend time with the astonished crew at The science centre. Thank you astonished without your generous support we would not be able to enjoy the fun activities Regina has to offer and all the amazing donors who help make this happen!!!!#joylab #astonishedThat’s over
This week is smile cookie week at Tim Hortons I encourage everyone to purchase a smile cookie in support of various charities every dollar counts for you today at the Astonished! teaching and learning centre along with myself and my fellow student researchers we handed out smile cookies to bring smiles to Everyone’s faces I think we did an amazing job!! It feels good to give back to our community
Hey guys here is the link to the first episode of less inspiration more conversations this episode Called identity streaks I hope you enjoy and I look forward to your feedback thanks everyon
In today’s post I thought it would be fun to pose to questions one of was prompted by one of my friends Facebook posts. Name one problem you experience that is associated with your disability well there you walk roll you do you both. For example mine is getting my long beautiful hair caught in my head rest feel free to share yours by commenting on this post whether you walk or roll or maybe both please shhar by commenting on this post. My second question for today is what do you like about your disability?
Hey everyone I had some technical difficulties with my previous post that I shared last night hopefully I will have the link for you to listen to by next week sometime sorry guys. Here is the link to the pilot pilot episode, happy listening everyone. https://soundcloud.com/user-561351082/pilot-pilot-kelsey-culbert
After some technical difficulties we were still able to have some fun and take some notes for my first podcast in the meantime here is a pilot of the service just to give you an idea of what my podcast will be a boat please feel free to comment on this post with any suggestions for topics or names for my podcast Happy listening everyone hope you enjoy and I look forward to your feedback https://drive.google.com/a/ryerson.ca/file/d/1HiwC213SvL4Jpko3KXocAA5zkPZyMkWN/view?usp=drive_web
So, some of you might know this already, but I have a podcast. If you haven’t already, please go check it out! Links are below. I hope to have more episodes coming in the near future.
This morning I woke up all excited to speak to if fantastic group of education students at the University every Dina kid the students asked a lot of questions and really paid attention two my take-home message and I am very much appreciated and enjoyed that I think the students for being Central great audience Great listeners especially at 9 AM in the morning I was never a fan of I morning classes insects hi would always follow sleep depending on the professor and the subject material students please feel free two poster questions here thanks so much