Blog

The way both disabled, and non-disabled people view disability can vary greatly. Different people with different mindsets, upbringings, lived or learned experiences & confidence levels; these things all shape how a person views disability. Generally, people’s views of disability fall into one of two categories: the medical model, and the social model.

In brief, in the medical model of disability, the person is disabled by their impairment, and emphasis is placed on a ‘cure’ or ‘almost cure.’ The person should adapt to their world. The medical model can create a mindset completely focused on cure and may cause people to feel broken or less-able.

In the social model, ‘disabled’ and ‘impairment’ are not the same. This model says that the person is not disabled by their impairment, but rather, their environment or society that is not accessible to them. It means disabled people are seen as equals and looked at for their abilities and meaningful achievements.

For example, under the social model, if I’m in a restaurant that has an electronic menu, I am not disabled in that situation; if they didn’t have an accessible menu, I am disabled in that situation, because the environment isn’t accessible to me, not because of my visual impairment. If I’m in class, and I’m not provided with digital materials, I am disabled because they’re not accessible.

I subscribe to the social model. It’s very freeing and solidifies that I am not the problem or in need of a cure, but society should be made accessible to me. Not only that, but able-bodied have a genuine, selfish interest in universal design as well, known as the ‘curb cut phenomenon;’ curb cuts help people in wheelchairs, but also cyclists, skateboarders, and parents pushing baby strollers. We all benefit when everyone is given equitable access.

Caelin is a Upopolis user. He has oculocutaneous albinism, which causes his eyes to have light sensitivity, poor visual acuity and no depth perception. Caelin has been teaching us about visual impairment since he joined Upopolis, and has also kept us laughing with his jokes and humour!

Sometimes, as an adult, it may be challenging to connect with youth. As youth grow older, they’re finding their independence. It’s natural for them to begin to explore relationships with friends and themselves. They’re interested in things we have trouble relating to and sometimes it’s as though they can’t even be bothered talking to us!

However, research show youth who share their emotions have better mental health. They’re more likely to talk openly about any problems they might be facing in their life, which gives us the opportunity to help them with cope with these challenges.

On Episode 10 of the Upopolis Podcast, our host Krista Naugler offers 5 therapeutic interventions for youth. With over 24 years of experience working with youth in many settings, Krista is able to identify her tools of the trade for helping youth connect with themselves, with others, and with you!

Whether you’re a child life specialist, parent, teacher, or service provider in the community, you’ll find these interventions helpful for your practice. Read on to learn the top 5 that Krista suggests using when working with youth:

1900’s texting – who are the people that make up this youth’s support system?

We know youth are into their devices, so meet them where they’re at. For this intervention, you can either use a real device or use old school pen and paper.

Have the youth write down something that they would like to say to someone who has been there for them, sort of like a note of thanks or acknowledgement. Then have them read the note to that person or send them the actual text. This gives them an opportunity to reflect on the supports they have available and to practice sharing with those people their feelings and gratitude. Bonus, they’ll see how touched everyone is to receive a note of thanks!

Fingerprint stories – helping our youth share a story, thought or feeling

This intervention requires an ink pad and a photo copier. Make an ink print of the youth’s finger or thumb print, then photocopy and enlarge it until it fills the better part of an 8×10”
paper. Place a blank white piece of paper over top of the enlarged photocopy and place on a window or lightboard (you may need tape). Give the youth a theme and have them write a story following the lines of their fingerprint. They can write about their experiences, feelings, dreams, an adventure, or a theme related to a goal you have for them. Once they have filled the fingerprint lines with their story, remove it from the light source and decorate it!

Learning from our youth – connect with them by having them teach you something

Ask the youth to teach you something new, like a favourite game they have! This helps them be the expert in something and gives them back a sense of control. An alternative is learning something new together, like coding. This provides them with something to learn and focus on, which is especially helpful if you need to encourage them to focus their time and energy into something positive.

Graphic design – youth can express themselves or educate others

There are TONS of apps and web-based programs for creating graphics; PicCollage, Canva and Smilebox to name a few. Helping youth design things like t-shirt logos, recipe cards and journal pages gives them an expressive outlet. It’s also another way to help youth feel like the experts if they plan to create something to help educate family or people in their class. You will be so surprised with what youth come up with!

Upopolis – connecting youth online with peers

Upopolis is a way to connect youth with others who are experiencing similar or the same journeys in life. We have spaces for youth with a chronic or critical illness/disability, a space for their siblings, and a space for youth who are grieving the death of a loved one.

A bonus of Upopolis is that youth get to help create content for the website and social media, they can access vetted medical content, and they can gain amazing experiences like volunteering, guest starring on our podcasts, and cowriting a blog.

If you have any questions about anything on this list, find us on social media @upopolis or send us an e-mail at support@upopolis.com. Happy creating!

Over the last couple weeks, our LGBTQ2S+ & U group on Upopolis has been talking about gender pronouns. Gender pronouns are words someone would like others to use when talking about or referring to them. The most common pronouns used are “he, him, his” and “she, her, hers”. When someone is transgender or gender nonconforming, they may prefer to use different pronouns, such as “they, them, theirs”.

If you’re cisgender, which means your gender identity matches the sex you were assigned at birth (i.e. Born a female and gender identity is female), you may have not given much thought to pronouns before. The pronouns a person uses are an important part of their identity. For people who are transgender, the shift in pronouns can be an important part of their transition. For example, Canadian actor Elliot Page recently came out as trans and noted that he uses the pronouns he/they.

So, how can you be supportive?  You might make a point of telling others what pronouns you use when you meet new people and asking if they’re comfortable sharing theirs. You might state your own gender pronouns in your email sign-off.  These are great ways to communicate that you are supportive of all identities and an ally to the LGBTQ2S+ community!

Once someone tells you their gender pronouns, try your best to remember what they are and use them appropriately. Of course, we’re all human and can make mistakes sometimes. Consider these tips for if you accidentally misgender someone:

1. If this happens during conversation with someone, calmly apologize, correct yourself, and continue speaking.

Do this even if the person you misgendered isn’t around. This will help you to remember to use the right pronouns in the future, to help others to remember, and to communicate your allyship to the LGBTQ2S+ community. There is no need to excessively apologize, justify why you made the mistake, or defend yourself. Doing this only centers your own needs and feelings over the person who has been misgendered.

2. Commit to doing better.

On your own time, reflect on why you made that mistake and think about how you can prevent yourself from making it again. This may even involve practicing using pronouns you are less familiar with so you can be more confident when using them in conversation.

The general consensus is that if you misgender someone, it should never be the responsibility of the person you misgendered to make you feel better about it or to help you do better at respecting their identity. Language can make such a huge impact on mental health and self-esteem, so we should all do what we can to communicate our respect to others with the way we speak, and the words we choose to use!

Last week, I had the opportunity to do a Upopolis podcast takeover and got an inside look into the world of two incredible youth with Crohn’s, Meghan and Rebecca. These youth spoke so candidly about their experience living with this disease, discussing what it was like to be diagnosed, how they cope with treatments, and advice they’d give to other youth or adults.

November is Crohn’s and Colitis Awareness Month. Crohn’s and Colitis are the two main forms of inflammatory bowel disease, which is a chronic and lifelong disease that causes inflammation of the gastrointestinal (GI) tract. These conditions can cause painful and disruptive symptoms that can impact all areas of a person’s life. Throughout November, I spent a considerable amount of time researching these conditions to post information and resources on Upopolis, but truthfully, nothing could have educated me the way these two youth did!

As an intern, I’m only just beginning my future career as a child life specialist. It was incredibly valuable to listen to Meghan and Rebecca’s perspectives. Here’s what I learned most from our time together:

• The process of receiving your diagnosis can be a long one, and it can lead to a lot of mixed emotions.

The youth talked about the emotional toll they felt going from being a healthy kid to being sick all the time. They mentioned how scary this time was for them both, and how they felt the need to hide it from others.

• Never underestimate the value of having a group of people who support you and know what you’re going through.

Meghan and Rebecca discussed how they relied on family, friends, and their healthcare team to advocate for them and to help them get through tough times. They noted that when they were connected to other youth with Crohn’s (many of which they met at a camp for children and youth with chronic illnesses), they went from feeling alone to feeling supported. They made lifelong friendships with people who truly understood how they felt.

• Invisible disabilities deserve just as much recognition and validation as visible disabilities.

Both youth discussed the same theme throughout the podcast: they felt because Crohn’s is invisible, it receives less recognition than disabilities or illnesses that you can see. The youth talk about feeling misunderstood, frustrated, and tired of pretending that they’re okay.

I think a crucial first step to increasing visibility for Crohn’s and other invisible illnesses is raising awareness. This discussion with Meghan and Rebecca was so informative, and I learned so much from listening to their experiences; I can bet you will, too!

Stay tuned to our social channels to find out when this podcast goes live! To listen to our library of other available podcasts for parents and professionals, check out this link: https://upopolis.buzzsprout.com/1275395

Written by Amiah Keresturi, Upopolis Intern and candidate of the Masters in Child Life & Pediatric Psychosocial Care from McMaster University

We know, Halloween 2020 is going to be very different this year. We could not have imagined back in March that we would still be faced with a pandemic almost 8 months later! But here we are, trying to flatten the COVID-19 curve while also trying to normalize the world for our children. It’s been a long year, but you’ve come this far! Congratulate yourself.

We don’t know how long this new normal will last, but we do know how important it is to continue to celebrate holidays and family traditions even if it means doing things different than last year. Always remember, children are resilient. You can, however, help them cope better by giving them simple and honest information about why things will be different this year.

You can help your children cope with changes associated with Halloween by following a few easy suggestions:

1. Explain, in simple terms, why normal Halloween activities are unsafe right now. If you haven’t done so already, you may have to start with an explanation of COVID-19. Click this link for more information on how to do this: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/kids-covid-19/art-20482508
2. Validate their feelings about cancelled/changed activities. It is normal for your children to be disappointed/frustrated/sad about not being able to trick-or-treat, go to costume parties, or celebrate with friends.
3. Offer new suggestions for possible activities, and involve them in choosing how they will celebrate. This allows them to feel a sense of control over something that they don’t have much control over.

So, how do you celebrate Halloween if you can’t do traditional trick-or-treating (or whatever your Halloween heart may desire)? The Centers for Disease Control and Prevention (CDC) released guidelines around Halloween activities as many traditional Halloween activities can be high-risk for spreading viruses. With the help of the CDC, input from child life specialists, and youth users on Upopolis, we have compiled a list of alternative Halloween activities so you can continue to make family memories!

Lower risk activities:

• Carving or decorating pumpkins with members of your household
• Carving or decorating pumpkins outside, at a safe distance, with friends or neighbours
• Decorating your house, apartment or living space
• Doing a Halloween scavenger hunt either inside, or outside at a safe distance from others’ homes
• Having a Halloween movie night with treats
• Having a “Candy Hunt”, around your house, living space or yard; hide the treats and have your children search for them!
• Having a virtual Halloween contest with friends and family
• Baking then decorating Halloween themed cookies

Moderate risk activities:

• Visiting pumpkin patches or orchards where people use hand sanitizer before touching pumpkins or picking apples, wearing masks is encouraged or enforced, and people are able to maintain social distancing
• Participating in one-way trick-or-treating where individually wrapped goodie bags are lined up for families to grab and go while continuing to social distance
• Meeting with friends or neighbours, outside, to show off each other’s costumes at a safe distance, while wearing cloth or medical grade masks

How will you be celebrating Halloween this year? Your answer may be different than last year, but if spending time with loved ones is already part of the plan, you’re ahead of the game.

Happy Halloween!

The third episode of our podcast, Upopolis: The Podcast, welcomed three child life specialists who also happen to be parents. Their experiences during the COVID-19 pandemic were all different, but they all parented with a unique lens: that of a child life specialist, whose role it is to help children cope with stressful life events.

In this latest episode, host and certified child life specialist, Krista Naugler, brought up the perhaps expected future of our community: the return of COVID-19 restrictions. As case numbers increase around the world, the possibility of returning to the “quarantine” life we dealt with in the Spring may be inevitable.

These working professionals shared the trials and tribulations of parenting during a world pandemic and how their behaviours and mindset were affected. Check out their takeaway tips from what they learned from the first time around so you can be prepared for the potential return of restrictions:

Tip #1: Vet your resources

Your children may be hearing so much information from different sources – their teachers, friends, family, or the news. Make sure you know where their information is coming from and if it’s factual. An explanation of a swab to test for COVID-19 may be explained very inaccurately by someone online than it would be from a hospital resource. “Check and vet” to keep your children in the know.

Tip #2: Be your child’s go-to for tough topics

Our children know more than they lead on. Although they may not always be open to talking about it, let them know that it’s OK to have tough conversations and that you are always here to support them and answer questions. If they ask questions, be honest with your explanations while continuing to reassure them that they are safe.

Tip #3: Practice gratitude

Some days will be really tough, and that’s OK. Take time at the end of each day to talk with your children about three really great things that happened. Emphasize their strengths, and pick out the small positives.

Tip #4: Always remember, you know your child best

Parenting is hard, especially during a world pandemic. This time has encouraged us to reexamine our expectations as a parent. Remember, you are doing what is best for your child. You know them best. Just because you might feel like you’re failing, doesn’t mean you’re not doing an awesome job. We’re all going to feel guilty, but every day is a new day and you are doing the best you can.

Check out Upopolis: The Podcast on Apple Podcasts or Spotify Podcasts, or by clicking this link: https://www.upopolis.com/en/resources/#podcasten