Category: health

Welcome to 2020!

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Hi Everyone! A warm welcome to 2020 from DisabilityPride.net!

Mary and I are working on a 2019 recap. Recaps are always interesting. They remind you of where you’ve been and sometimes they hold little surprises – accomplishments you’ve forgotten about. For instance, between January 23, 2019 and December 17, 2019 our followers on DisabilityPride.net’s Facebook Page doubled in readership!  To each of you, we extent a very heartfelt thanks for your interest in what we are doing.

As I said, a 2019 recap will be forthcoming soon. We are not yet sure what form this might take – whether it will be a blog post, a newsletter, or some other form. We’ll just let it take on a life of it’s own and see what it grows into – maybe a “magletter!” There!!! I likely just created a new publication term. Haha!

Depending on its formation, we may turn this into a bi-monthly or quarterly paid subscription publication, which we will of course make available through DisabilityPride.net’s Online Shoppe . Also of course the first edition will be free!

Anyone interested in learning more about the subscription can just shoot us a message on our Facebook page , and we will keep you posted. Of course you already know that your subscription fees will be supporting the work of this blog, and all that we do.

One new  venture that 2020 brings and starting next week, is that I will once  again be “a student”‘ of sorts, in TEAMWork Cooperative ‘s Self Employment Program. It  will be an interesting venture and I look forward to seeing what is to be learned from it and the new contacts that Mary and I are bound to make.

So, 2020 seems off to a roaring start for DisabilityPride.net.

We hope that your 2020 will be likewise.

Pay the Phantom Tollbooth

Beauty at (and in) Work

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Mary again! Earlier this week, I had a blast hanging out with Gerianne while she got her

Hair dressing equipment and tools

hair done by Patsy of Hair to GO Mobile Hair Service . Patsy offers an amazing experience, bringing beauty and hair care to people who face barriers getting to a traditional salon or barbershop. We had some great discussions which will probably spawn some very interesting posts in the future however, while I was observing Patsy, I was reminded how much beauty there is in watching someone work, doing what they love. There is a special kind of beauty in that and in the tools they use to get the job done.

Save Yourselves!

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By: Mary M. Wilson

Taking the ferry to Dartmouth today, we noticed the safety video was missing instructions for people who rely on wheelchairs and mobility aids. @hfxtransit should be aware that traditional life jackets and inflatable rafts are not useful for wheelchair users and should include instructions for our safety too!

Stop The Shock!!!!!

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On April 24th, 2014, the FDA held their first hearing regarding the use of shock devices at the Judge Rotenberg Center. That hearing was the result of decades of advocacy. Every year since then, activists have pushed the FDA closer to releasing a rule to end the use of shock devices on our community members. Thanks to your advocacy, this year the ban is on the FDA’s legislative agenda, and we’re closer than ever to ending electric shock torture at the JRC. We can’t stop now — we have to keep up the pressure on the FDA until they #StopTheShock for good. You know what to do! Check out the email below for scripts and tips.

How have you taken an action to #StopTheShock? Let us know by tweeting #WeAreStillWaiting along with what you’re doing to fight back. Remember, you can spend as little as five minutes or five seconds during your day to help end the use of shock torture against our community members. Acceptance is an action-we’re counting on you to take it.

———- Forwarded message ———-
From: Autistic Self Advocacy Network
Date: Mon, Apr 1, 2018 at 4:00 PM
Subject: 📣 Acceptance is an Action. #StopTheShock with us this Autism Acceptance Month 📣

Autism Acceptance Month is now underway. Acceptance is not passive—it is an action, and that includes taking action when members of our community are in danger. Last April, we began a campaign to #StopTheShock at the Judge Rotenberg Center, where autistic people and those with other disabilities are currently being tortured using electric shock devices. The FDA has announced plans to ban these devices, but they have not released the ban yet. We need YOU to tell them that #WeAreStillWaiting and demand that they act NOW to #StopTheShock.

Here’s how we’re telling the FDA that we’re watching out for our community members:

April 24th will mark five years since the first FDA hearing on electric shock devices. In those five years, our community members have faced torture at the Judge Rotenberg Center. We are closer than ever to seeing these dangerous devices banned for good, but #WeAreStillWaiting – and so are they. Join us to #StopTheShock now!

Support our work

Autistic Self Advocacy Network

PO Box 66122

Washington, DC 20035

When You Need’em Most

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Ahhh! It’s so nice to know that when you’re in your most vulnerable medical need, our Emergency Health Services (i.e. the paramedics / ambulance) are right there for ya….with a bill – that you can’t afford to pay.

In Nova Scotia, for some bizarre reason, our ambulance service is privatized, which means and depending on where you are when you need an ambulance service, you’re gonna pay for it,  and if you’re like the majority of those with a disability who’s on low income, you’re gonna pay BIG!!!

On December 29th, after several days of being sick with Strep Throat plus a severe allergic reaction to the antibiotic for the Strep, I arose with extreme pain in both upper arms. I immediately realized that I could barely drive my power-chair within my apartment, never mind driving to a bus stop, or a long trek (by foot/wheel) to emerge. Still, I needed to know fast what thee hell was happening to my arms! Was this going to be a long term / permanent condition? If so, how the hell would I get around – even in my own apartment?

So at my direction, my attendant called 911. The paramedics were great. Both were very kind and helpful. They got me to emerge quickly. I would like to be able to say that once in emerge all went well, but I can’t. Even though it’s on my medical data that I’m allergic to Sulfa, (and with any allergy, the triage staff always put a red identifying band on your wrist) I unknowingly was prescribed a medication which contains Sulfa. This led to a second allergic reaction, resulting in blisters developing on both wrists for several days.

All this was by no means fun, but it’s life. Shit happens, as they say. But then a short time later, (when I barely had time to start recovering) I get 2 EHS bills (one for going to emerge and the other for going home since I didn’t have my power-chair with me) totaling nearly $300!  Ouch man!

I’ve been told in the past, that if you’re taken by ambulance from a public place, i.e. a minor street accident, the EHS is free, but if they’re required from your home, look out for a huge bill.

In thinking about this, the EHS billing criteria seems more than unfair. If you get a few scrapes, you get a free ride – literally, but when you no other means to get to emerge from your home, you pay through the nose.

My hope in posting this little story is that someone within the system will read it, recognize the problem affecting many people in situations similar to mine, and will work on finding a fairer billing fee structure.