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Melinda Gates’ Pivotal Ventures and Techstars unveil cohort for ‘Future of Longevity’ Accelerator

09/02/2020

A group of ten startups will spend the next 13 weeks coming up with innovative caregiving solutions for aging adults.

Melinda Gates’ Pivotal Ventures and Techstars unveiled the first cohort for the new Future of Longevity Accelerator, a program that supports startups building products and services for caregivers.

Companies range from device makers to software platforms. Seven of the 10 CEOs are women, and nearly half of the founders are Black or Latinx. See the full list of companies below, with descriptions from the program.

  • Braze Mobility: Braze Mobility has developed the world’s first blind spot sensor system that can be attached to any motorized wheelchair, transforming it into a “smart” wheelchair. With Braze Mobility, users can more easily spot obstacles, helping to reduce the risks of injury and wheelchair damage and help users maintain their dignity and independence.
  • Candoo Tech: Candoo Tech provides on-demand tech support and training specifically designed to help older adults stay safe, independent, and connected. The company provides one-off sessions, device setup, and ongoing support for members looking to use technology to connect with family members, attend telehealth appointments, and go online.
  • Naborforce: Naborforce connects a network of community members, “Nabors,” to older adults for assistance with basic tasks and social engagement. These “backup” sons and daughters address the caregiver shortage while also helping combat loneliness.
  • UpsideHōm: UpsideHōm offers the only fully managed, shared living option for older adults to address the problems of loneliness and cost of housing.
  • ConnectCareHero: ConnectCareHero is an activities management platform that enables the teams supporting senior citizens to streamline state-required documentation, keep families easily connected, and provide a place where they can plan curated activities.
  • MemoryWell: MemoryWell is a digital platform that uses storytelling to improve the care of older people. Using its network of professional writers, MemoryWell works with families, senior living communities, and home- and community-based providers to replace intake questionnaires with brief, intimate stories designed to build empathy and be poignant keepsakes for families.
  • Rezilient Health: Rezilient’s robotic telehealth platform allows physicians to not only provide standard video visits, but also remotely control the positioning of medical devices that are located with the patient at another physician’s office, pharmacy, or nursing home, among other locations.
  • Rubitection: Rubitection’s skin health and care management tool improves the detection, risk assessment, and care management of dermatological and vascular conditions with an initial application to bedsores and diabetic foot ulcers for seniors at home, in nursing homes, or in hospitals.
  • Authored: Authored creates apparel that is thoughtfully engineered with discreet openings that adapt to body needs and limitations. The startup’s clothing promotes and prolongs independence, enables safer dressing, and reduces stigma and injuries.
  • Wysefit: Wysefit is a fitness app created specifically for older people. Taught by certified instructors and health professionals, the app’s programs address the needs of people as they age—from stretches to help with arthritis to exercises to build muscle and reduce lower back pain.

https://www.geekwire.com/2020/melinda-gates-pivotal-ventures-techstars-unveil-cohort-future-longevity-accelerator/

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5 Social Distancing Tips for People Who Use Wheelchairs

08/26/2020

The COVID-19 pandemic presents a wealth of changes, challenges, and anxiety for everyone. While it may feel like we are all helpless in slowing and stopping the spread of the deadly disease, social distancing has been effective in “flattening the curve” of infection, and relieving the pressure on the already strained health care system. In these times, it feels good to know the simple act of maintaining 6 feet of distance from others and staying home is helping those we care about, and those fighting the disease at the front lines. 

For those who have a disability or have challenges with mobility, staying 6 feet away from others is difficult, if not impossible to follow. Personal care requires contact with other people, and the use of mobility devices in crowded areas is already often a challenge to navigate safely without the added challenge of maintaining distance from others. The following list contains some ideas for social distancing while using a wheelchair, but we would love to hear how you are keeping safe during this pandemic. Leave a comment below!

1. Have help to monitor distance from others in your blind spots.

Trying to navigate in tight spaces like hallways and stores is difficult enough, let alone when people aren’t respectful of the space you need to keep yourself and others healthy. One way to let people know they are getting too close is to use the Braze Mobility Blind Spot Sensor system. Braze systems can be set to customized distances, and auditory feedback can be activated at the flip of a switch. Before leaving the house, simply set your Braze System to a 6’ threshold, turn the audio on, and make sure people know when they are getting too close to your wheelchair, without having to turn around! 

2. Avoid going out with your mobility device by staying in. 

Where possible, use this time as an opportunity to leverage your community and stay home! Avoid the lines, fist-fights over toilet paper and general mayhem that is happening at the grocery stores. Ask friends to pick up the things you need and drop them at your doorstep. This also gives the added bonus of having a socially-distanced visit with your friends while they drop the items off! There are also lots of delivery services that can get you the things you need from the comfort of your own home. Just be sure to properly clean anything that gets delivered. If you are unable to clean things yourself, consider leaving a container of disinfecting wipes and clean gloves out for your delivery-folks to wipe them down with (and maybe an extra tip for them!)

3. Plan your trips out.

Grocery stores, pharmacies and other essential stores often have times for people who have special considerations to shop at a quieter time. This is often in the mornings so if you are feeling like an early-bird give your local stores a call or an email and ask about what kind of considerations they have in place for shoppers that need some extra space or some assistance to maintain their social distance. 

4. Foster a virtual social network.

One of the best parts of this time is that it has given me the chance to reconnect with friends that live far away. Apps like Zoom, FaceTime, Facebook Messenger and HouseParty are great for making the social-distancing time feel like a remote-socialising time! Reach out to some old friends, maybe someone who moved away a while ago, and reconnect- you might just find a silver lining in the COVID-19 stormcloud!

5. Encourage anyone you are unable to socially distance from to follow all regulations.

We all have to work together during this time, and wherever you are not able to socially distance, you must rely on the people you interact with to keep themselves healthy. Having those who you do interact with follow guidelines is an important step in keeping yourself and them safe. Be sure to remind people who enter your home to follow the WHO and local health department guidelines for limiting the spread of the disease, such as wearing the proper personal protective equipment, following hand washing guidelines, and keeping a distance from others. Keeping yourself up to date with the recommendation from the WHO and other health departments is a great way to ensure that you are passing on the correct information to those around you!

All of us at Braze Mobility wish you all the best during this difficult time. Stay safe and healthy! 

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Face Masks & Disabilities

08/23/2020

All advice in this blog should not replace medical advice. Be sure to follow updates from the WHO and CDC/Health Canada for the most updated advice on COVID-19 management. 

As the COVID-19 pandemic evolves, the ability to go to stores, restaurants and other public places has been a welcome relief to many after months of isolation. Here in Ontario Canada, the opening of businesses has come with the requirement of all customers to wear a face mask or covering while inside the business (unless seated and eating). These laws are designed to keep everyone safe, while allowing a return to the lives that we have all been missing. 

But, how do people with disabilities fit into these laws? The use of facemasks may be a challenge for many people. According to the ADA, the people who may be limited in their ability to use a face mask includes: 

  • Someone who has low fine motor skills or spasticity in their upper body may find putting on or taking a mask off difficult
  • Someone who relies on lip reading for communication may find it difficult to understand others while they are wearing a mask.
  • Someone who uses a mouth-control for their wheelchair such as a sip-and-puff alternative joystick control would not be able to wear a mask while operating their chair. 
  • Someone who has speech impairment may not be understood while wearing a mask.
  • Someone with autism may experience sensory overload when having a mask covering their face
  • Someone with PTSD or claustrophobia may experience severe fear when wearing a mask
  • Someone with COPD or other breathing difficulty

For all of these reasons and many more, people with disabilities may not be able to wear facemasks in public. There is a requirement by the ADA to modify the rules around mask wearing to accommodate people with a disability. Some suggestions include: 

  • Allowing prompt curbside pickup from a safe social distance, using both telephone and internet orders
  • Allowing loose-fitting face coverings when entering buildings, including face shields
  • Allowing people to wait in vehicles for appointments, and calling them in when ready
  • Providing phone or video appointments as an option

All of these options are useful, however many of them do not reduce the isolation, or help return life to normal. People with disabilities have been greatly impacted by social isolation, and enabling a return to normal everyday life should be a priority. Some ideas for helping people with disabilities overcome the challenges of wearing masks include: 

  • Facemasks with transparent windows have been made by accessibility-focused groups  such as the Como Foundation to help those who are hard of hearing access masks that enable communication through lip-reading
  • Face Shields are another more loose-fitting option. Although the CDC does not currently recommend using face shields in place of a mask, they recommend that a mask that wraps around the face, and descends past the chin may be used when a mask is not a viable option. 
  • Help educate others about the importance of wearing a mask. If you are unable to wear a mask, help others protect you by encouraging proper mask wearing and hand cleaning & surface sanitizing. 

We would love to hear your ideas for staying healthy and returning to activities of daily living in the face of COVID-19. Leave a comment below! 

Sources:

COVID-19: Considerations for Wearing Masks. (2020, August 7). Retrieved August 08, 2020, from https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/cloth-face-cover-guidance.html Williamson, P. R., Morder, M. J., & Whaley, B. A. (2020) The ADA and Face Mask Policies [Fact sheet]. Retrieved from https://www.adasoutheast.org/ada/publications/legal/ada-and-face-mask-policies.php

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AMI This Week: Shortcut with Alex Smyth

08/10/2020

Alex Smyth learns about Braze Mobility, a company making blind spot detectors for wheelchair users, and chats with the CEO, Dr. Pooja Viswanathan, and a client to discover more.

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Braze Mobility image with symbols from mechanical cogs, joystick, power, lighting, and addition.

Things to Consider When Ordering a Power Wheelchair

07/23/2020

If you have recently been prescribed a power wheelchair, there are quite a few things to consider. There are many different options to choose between, and ensuring that you are provided with a chair that is right for you is important. The following blog post offers some ideas about options that you have when choosing a wheelchair. Speak to your Occupational or Physical Therapist and your wheelchair vendor if you have any questions regarding your wheelchair order. The following post contains some ideas of things to consider, but is not meant to be an exhaustive list of all options available.

Location of the drive wheels

The optimal location for the drive wheels on your chair will depend on a few things. Often, once someone gets used to a certain location of drive wheels, any other location might feel weird. Each type of chair has different pros and cons, so there is no one best location. Check out this website for a full comparison of the wheelchair drive trains.

Rear wheel drive

Pros: These chairs usually have the highest top speeds, and are very stable navigating rugged terrain.

Cons: The turning radius is higher in rear-wheel drive chairs, making navigation in tight spaces more difficult. Additionally, the concentration of mass at the back of the chair makes tipping on uphills more likely.

Front Wheel Drive

Pros: You will be able to turn your front end very quickly, making rounding tight corners easier! These chairs are also very stable, because they distribute the overall mass of the chair the most evenly. Additionally, you will be able to get close to workspaces or tables easily.

Cons: going uphill these chairs have a higher chance of losing traction, as if the mass is concentrated on the rear of the chair the front wheels will have less ability to grip. When turning corners in a front wheel drive chair it may be difficult to maintain awareness of the rear of the chair. This could result in hitting more things with the back of the chair if you aren’t careful! At top speeds, these chairs have also been known to be difficult to maintain control.

Mid Wheel Drive

Pros: These chairs are the most maneuverable of any chairs! You do not require any extra space to turn than that which you already have. They are also the most stable on a slope, because the mass is centered in the middle! Often, people find mid wheel drive chairs the easiest to drive.

Cons: They can get stuck in uneven terrain if the front and rear castors suspend the middle wheels.

Joystick Control Options

You can operate your chair using a few different methods depending on your abilities and preferences. These are some of the most common control types:

  • The most common control used is a hand-held joystick controller. These are controlled by using your hand to move the control arm in the direction you wish to go. Operation of these requires motor control of your hand and arm.
  • Chin control uses a chin instead of a hand to control the joystick. The controller will be mounted near your face, and you will use your chin to move the control arm.
  • A head array is a control that you can trigger with your head. Pushing your head towards the sensors on either side will turn the chair, and pushing your head backwards will make it move forwards. To reverse, a switch is activated and then you can push your head back on the head array.
  • Sip and puff users control their wheelchairs via air blown into or sucked out of a straw-like controller. For example a hard puff may mean forwards, and a hard sip backwards. Soft sip and soft puff may correlate to a left or right turn. This control method requires practice to drive smoothly, as the output is not intuitive.
  • Touchpads do not require much force, but do require steady control of the hand and arm. Sliding your hand along a controller panel will move the chair in that direction.
Lighting Options

Lights can be added to wheelchairs when ordering, however this option is typically quite expensive and often not covered by public insurance. Lights are important to ensure safety when driving, especially in traffic. This blog post discusses the importance of visibility in a wheelchair to prevent injury. If you do not want to spend hundreds of dollars on lights from the wheelchair manufacturer, many people create DIY solutions, including attaching battery powered lights to the chair. If you aren’t able to create a solution yourself, organisations like the Tetra Society may be able to help you make a custom light solution.

Power tilt, lift and elevation

Many power wheelchairs are able to tilt, recline, and seat elevate electronically. These features can be especially useful for people who are unable to adjust themselves in their seats. Being able to tilt back is an easy way for care attendants to help someone adjust back in their seat. Being able to recline is important if you are going to spend a lot of time in your chair as it will allow you to stretch your back out. Elevation will allow you to rise up to eye level with people who are standing, and is useful to reach high cabinets, and to reach counters at cashiers and coffee shops etc. These features may be funded depending on the need for them. Without funding, electric tilt, recline and elevate can cost thousands of dollars. Speak to your therapist about whether or not these features are right for you.

Options for Power Wheelchair Add-Ons

There are many different things that you can buy to add on to your wheelchair. Many of our blog posts discuss add-ons, including those that increase safety, increase rear visibility and are just cool features. One feature that you can add on that fits into all three of these categories is the Braze Sentina, which is a blind spot sensor system designed for use with wheelchairs. Learn more about the Braze Sentina here!

When you first bring your wheelchair home, you may find it difficult to know what the footprint of the chair is, and as a result there is a high chance that you will bump some walls and doorways in your home. This can be avoided using various visual aids, such as blind spot sensors to monitor the environment behind your wheelchair. Braze Mobility Inc. makes blind spot sensors that can be added to any wheelchair, and provide the user with 180 degrees of rear view blind spot coverage. More information about these systems can be found here

I hope this blog post has given you an idea of some of the options available to you in selecting your new wheelchair. Your OT and/or PT and wheelchair vendor are there to answer all of your questions and support you in your selection. Make sure that you advocate for yourself, and know your options in order to ensure that the chair you get is right for you. Please comment below if there are any other features you think should be included!

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Bethel University Students, Toronto Entrepreneurs take home top honors at Destination Medical Center’s Assistive Tech Challenge Virtual Pitch Competition

06/05/2020

Braze Mobility from Toronto placed First in the Professional Division for its patent-pending blind spot sensor system that can transform a wheelchair into a ‘smart’ wheelchair that automatically detects obstacles and provides multi-modal alerts to the driver. Dr. Pooja Viswanathan, co-founder and CEO pitched the product. Other team members include Namit Sharma, Dr. Alex Mihailidis and Madeleine Rawling.

“The DMC Assistive Tech Challenge was a great virtual experience,” said Viswanathan. “It was incredible to see so many companies working on assistive technologies that will impact millions of lives. Braze Mobility will be using the prize money to help accelerate development of sensor technology that will enable safe and independent wheelchair navigation.”

Read the full article here: https://dmc.mn/bethel-university-students-toronto-entrepreneurs-take-home-top-honors-at-destination-medical-centers-assistive-tech-challenge-virtual-pitch-competition/

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5 Movies About People with Disabilities

05/29/2020

The world is starting to open back up after COVID-19, however we can all do our part to reduce the spread by staying home during this long weekend. No better way to motivate yourself to stay home than a Netflix-marathon! Here are some ideas for shows that have people with disabilities in them! What are you binging?

Crip Camp: A Disability Revolution

This movie is an incredible story about the plight of those on the forefront of the disability rights movement in the United States. From it’s beginnings at a hippy-run summer camp, to sit-ins and protests and the community and friendship that sustained the movement all along the way, this movie is both incredibly powerful, moving, inspiring, humorous and overall a must-watch. 

The trailer can be found here: Crip Camp: A Disability Revolution

The Fundamentals of Caring

This movie is a fun and witty watch! It is about a man named Ben who suffers a personal tragedy, and quits his job to become a caregiver for Trevor, a teen with Muscular Dystrophy. The two embark on a road trip and chaos ensues. While the story centers around the client-caregiver relationship, it emphasises the human-ness in the relationship and does not leverage Trevor’s disability for cheap tear-jerking in the way Hollywood typically does. 

The trailer can be found here: The Fundamentals of Caring

Raising Dion

In this super-hero show, Sammi Haney, a 9 years old who uses a wheelchair, plays the main character (Dion)’s friend Esperanza. She is his wise friend, who helps keep Dion out of trouble (as much as she can!). This show is fun for the whole family and definitely worth a watch!

The trailer can be found here: Raising Dion

Switched at Birth

Looking to brush up on your ASL? Look no further than Switched at Birth! This show is about girls who find out they were switched at birth. One character is hard of hearing, and played by an actress who is deaf. Much of the show is signed in ASL, and gives viewers a deeper understanding of the deaf community. 

The trailer can be found here: Switched at Birth

Breathe

The story of a man who is unable to breathe independently, but refuses to live in the confines of a hospital for his life. Him and his wife embrace the technological innovations available to them to be able to leave the hospital, and embrace life together. This movie shows the importance of technology to destroy the barriers facing people with disabilities from living independently. It shows how far adaptive technology has come. To learn more about adaptive technology and the importance of it to support independence, check out Braze Mobility Blind Spot Sensors for Wheelchairs

The trailer can be found here: Breathe

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Finalists announced in startup competition that will showcase technology-based solutions for seniors and caregivers

05/28/2020

Fifteen Canadian startups have been chosen to compete in this year’s AGE-WELL National Impact Challenge, it was announced today.

Finalists will be challenged to explain how their technology-based solution can positively impact older Canadians or their caregivers.

Five finalists will compete in each of three virtual events reflecting the broad spectrum of innovation that exists in Canada’s AgeTech sector. The winner at each event will receive $20,000 in cash, plus in-kind prizes.

Finalists in Competition #1 (June 18 livestream):

  • eNable Analytics
  • HomeEXCEPT
  • Novalte
  • ServUs Health
  • Sparrow Acoustics

Finalists in Competition #2 (July 9 livestream):

  • Able Innovations
  • Braze Mobility
  • Neurofit
  • Stabilo Medical
  • VitalTracer

Finalists in Competition #3 (Sept 29 livestream, in conjunction with the BC Seniors Living Association annual conference):

  • GTCare
  • MatchWork
  • Seven Movements
  • Tochtech Technologies
  • Virtual Gym

Read about the finalists here.

To register to watch the first two pitch events via livestream, please visit the competition main page. Registered audience members will have a chance to win a Kobo eReader.

Each event also includes a lively panel discussion on the future of AgeTech and its impact on areas such as brain health.

“The need for technologies and services that benefit older Canadians and caregivers is more apparent than ever in these challenging times,” said Dr. Alex Mihailidis, Scientific Co-Director and CEO of the AGE-WELL Network of Centres of Excellence. “This competition will spotlight top Canadian startups whose innovations can support the health and quality of life of seniors and those who care for them.”

The competition will also support entrepreneurship in Canada’s AgeTech sector, and advance our country’s leadership in technology-based solutions that benefit people everywhere, Dr. Mihailidis said.

AGE-WELL, Canada’s Technology and Aging Network, brings together researchers, older adults, caregivers, partner organizations and future leaders to accelerate the delivery of technology-based solutions that make a meaningful difference in the lives of Canadians.

AGE-WELL thanks all startups and entrepreneurs who submitted applications to the AGE-WELL National Impact Challenge, and congratulates the finalists. Each finalist will deliver a 5-minute pitch, followed by a 5-minute Q&A with a panel of expert judges.

Thank you to the sponsors of this competition: Aging2.0 Local I Halifax Chapter, BC Seniors Living Association, Bereskin & Parr LLP, CARP, IBM Canada Ltd., Impact Centre, Innovacorp, Innovation PEI, New Brunswick Innovation Foundation, Ontario Brain Institute, Spectrum Health Care, and YouAreUNLTD.

newswire.ca/news-releases/finalists-announced-in-startup-competition-that-will-showcase-technology-based-solutions-for-seniors-and-caregivers-814690251.html

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Preparing for Emergencies When Using a Wheelchair: Healthcare

05/24/2020

As the world faces the COVID-19 crisis, it is time to evaluate what emergency preparedness means for the disability community and wheelchair-users in particular. The focus of this article is the development of the health care accessibility standard for people with disabilities. This advice is written by Terri-Lynn Langdon who is a resident of Ontario, Canada and uses a wheelchair. The opinions expressed are Terri-Lynns, and should not replace medical advice. 

The healthcare concerns of the wheelchair-using community demands attention every-day in order to continue to make healthcare services and options increasingly accessible to all of us, and no time for this is more crucial than during the Covid19 crisis. Here are 5 things to consider when advocating for yourself in the healthcare system to ensure you are ready for whatever the happens.

  1. If you do not have a family doctor, reach out to your local health care network and inform them of your situation, and ask to be advised on next steps. In Ontario, contact Health Care Connect http://www.health.gov.on.ca/en/ms/healthcareconnect/pro/
  2. If there are non-essential medical needs during this time, speak to your healthcare provider about accessing your appointment remotely through tele-health or delaying it until after COVID-19 concerns are controlled.
  3. For essential care needs try to access a familiar clinic and use the same service as often as possible to help ensure continuity of healthcare and communications related to your healthcare visits. Make sure you let your healthcare team know what you need in order to make your healthcare experiences as accessible as possible, this includes transportation to medical appointments.
  4. In a medical emergency, you cannot control which hospital or medical team you receive care from. For this reason, keep a summary of your medical conditions, emergency contacts and medications in your wallet.
  5. Make sure that your medications are up to date and that you have access to them. Call your local pharmacy and see whether they will deliver your medications. Call ahead to pre-book delivery to ensure you are able to receive your medications on time. 

Thank you for joining us! Come back next week for the second part of the Emergency Preparedness for People Who Use Wheelchairs series. 

Sources Consulted:

Health Care Connect Ontario. Accessed Online:  http://www.health.gov.on.ca/en/ms/healthcareconnect/pro/ 

Lapofsky, D. (2019). Achieving a barrier-Free healthcare system. Osgood Hall Law School. Accessed on Youtube: https://www.youtube.com/watch?v=f2yuFz_z9V0

Medic Alert Canada (2020). Accessed Online: https://www.medicalert.ca/programs

Revoler (2020). Accessed Online: https://revolar.com/ Thompson, G. (2020). What Must Be Done to Make Ontario’s Health Care System Fully Accessible to Patients with Disabilities? Check Out the AODA Alliance’s Finalized Framework for the Promised Health Care Accessibility Standard. Accessed Online: https://www.aoda.ca/what-must-be-done-to-make-ontarios-health-care-system-fully-accessible-to-patients-with-disabilities-check-out-the-aoda-alliances-finalized-framework-for-the-promised-health-care-accessibility-st/

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An Open Letter to Mothers with a Disability

05/10/2020

On this day of celebrating the triumphs and joy of motherhood, we want to wish all parents and mothers a wonderful day, and thank them for all of the work that they do. This blog was written by Terri-Lynn who is the mother of an 18-month old daughter, and uses a wheelchair. In this open letter, Terri-Lynn shares her experience, including the challenges and guilt that can arise as a result of societal pressures and opinions toward parents with disabilities. 

To all of the disabled mothers and parents on this day, I want to let you all know that in my mind and in my heart you are loved, you are loved, you are loved.

In a world where disabled parents are constantly questioned by ignorant others who ask, “is that child yours?” I feel the heartache of that….

In a world where disabled people are told that their genes are dangerous or unwanted, I am sending love.

In a world where you are told that your role as parents is unwanted, undesirable, unlivable, inconceivable, irresponsible, and selfish, I am sending love….

In a world where you may be told that you are a burden to society and to your own children, I am sending love….

In a world where disabled parents are often subjected to violence in the form of cutting words and myths, I am sending love.

In a world where your parenting role is validated, praised, and valued I am sending love and hope that others in the world can get to that place as well.

To all parents with a disability: I hear you, I see you, and I am holding a space of love and hope for a world that honors disabled parents and disabled women on Mother’s Day. 

I am a single-choice mom and a wheelchair-user of a 19 month old little girl. I love my daughter deeply, and we have conquered many challenges together. On February 1st of this year I sent out an SOS on Facebook for help. In hindsight, I’m unsure why I sent this particular SOS because I was offered help but ironically, I did not have time to respond. However, I do know it made me feel as if I was doing something to maybe change the course of a very bad day. 

My day went as follows: our nurturing assistant did show up but she had to leave early. All was well but Jaycie didn’t nap at all that day and by 2:30pm all of the contents of my daughters’ lunch of chicken pasta in tomato sauce and rice pudding were on the floor. I left her momentarily with some crayons and a coloring book to go pee and in that minutes long period of time the tomato sauce and rice pudding were all over the floor and the wall mixed in with toilet paper in a fantastic piece of 15 month old paper mache art. My efforts to clean this all up were met with more mess in the kitchen by my 15-month-old artist. I was about to lose my mommy-mind so, after I cleaned up my little girl, I told Jaycie we would put on her shoes and go for a walk in the halls and in the lobby. She agreed, as she is a talented runner. All was well. The day was getting better I thought, but then….

My little girl got stuck in an elevator by herself because it got jammed and refused to open. I could hear her in the elevator, but the door would not open. I yelled out to my neighbours when it appeared that the elevator went to the parking garage. The security guard was nowhere in sight. One neighbour went downstairs to the parking garage by foot; the other one called 911 to say my kiddo was stuck, alone, in the elevator. A third neighbour who was just coming in from the parking garage picked up Jaycie and brought her to the lobby. When she saw me she was laughing and was all smiles. My heart had to be revived.

In this story, on this day, all was well. But there are deep moments of guilt within that story as a wheelchair-using momma. Starting with… well if my legs worked I could have run down to the parking garage myself. If my legs worked, and if only I had enough depth-perception to drive, I might know where the parking garage is (I’ve actually never been there!). If I had more balance I could and should mop up the tomato-sauce rice pudding toilet paper-mache mess off of the floor. But, in the absence of that, most of that mess will be there in some form until tomorrow when an able-bodied person using able-bodied tools will, and can do it. None of this would have happened if we could just take the stairs!

And the very worse thought of all….yes the elevator obviously malfunctioned, that could have happened to any parent regardless of ability, but what if Jaycie went into the parking garage and because she is so small and so unexpected in that in that environment…what if she had been hit by a car!?

This is my experience of deep guilt as a disabled mother. It’s actually hard to write about.

Since the state of emergency in Toronto my extremely happy, and engaged child has become distressed some of the time because the loss of daycare and going out to play spaces and seeing friends is not possible. For the first time, I am seeing my child struggle with boredom.

And I…. love the privilege of being her mom and at the same time I’m an exhausted woman. Due to a spinal condition I am not supposed to lift anything over 20 lbs. Jaycie is well over 20 lbs and I lift her all of the time, and now many more times a day, due to a lack of her wonderful daycare. As a wheelchair- user you can’t lift anything with your legs to offset the weight as is the ‘safe-lifting procedure’ for folks with more mobility. 

And without writing a very long essay. I need to say to disabled parents and to anyone who might listen and might care that the disability community and disabled parents have been largely overlooked and forgotten in this pandemic and that is a weighty truth.

A few days ago, Jaycie was very direct in reporting “I not bebe.” She also absolutely burst into tears in the lobby a few days ago when no one would hug her or pick her up. This was a regular highlight for her and for me before the pandemic hit.

In an effort to be ‘a good mother’ I am not imposing any kind of additional changes in my young child’s life at the moment. For example, a pediatrician recommended that we give up bottles just before  the pandemic and I’ve chosen not to do that because it might represent  another loss for my child. Additionally, My child has some toys that she has grown out of including a push-cart that she doesn’t need because she runs and has great balance all on her own. But because she loves her push-cart, I’ve not rehomed it yet.

Terri-Lynn’s daughter wearing sunglasses

What I have learned in this time is that I am incredibly strong. My child just had her 18 month doctors appointment and from the point of view of that visit, Jaycie is doing great. My child is strong and resilient, and wildly intelligent and funny. I am always-already reminded of how deeply human we all are from the late night feedings, and deep mother-guilt. Occasionally my child wakes up at 3:00am just to attempt to tell me a story or sing Old Macdonald and that is to be cherished. There are also my own wild nightmares, body pain, the limits of my body faced with the limits of the pandemic and the limits of a toddler’s body-mind. There is my own mind and my own wild nightmares. And in being human- at the end of the day- there is hope.  

I have also learned that I should never have quit drinking coffee.

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