I’ve been trying to write an article on emergency preparedness when disabled. It’s so hard I would need 10 “go bags” to account for my complex medical needs. I can’t evacuate without assistance. Many places aren’t safe for me Disabled people need to be included in emergency plans - ThreadSky

broadwaybabyto.bsky.social • 52 days ago

I’ve been trying to write an article on emergency preparedness when disabled. It’s so hard

I would need 10 “go bags” to account for my complex medical needs. I can’t evacuate without assistance. Many places aren’t safe for me

Disabled people need to be included in emergency plans

Reposted from Alice Wong

It's truly frightening and realistic for folks like us to know it will be very difficult for us to evacuate. As my friend and I were grousing about there's no practical way to create a go bag if you have complex medical needs. SIGH.

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oneoffdave.bsky.social•52 days ago

When I was doing research for my MSc, I found a really good US based guide for this. Emphasises the complexity. I'll dig out the link tomorrow. I've been trying to find the time to write a UK focused version

chrish4med.bsky.social•52 days ago

I very much sympathize.

Maybe you could start with 2 questions:

1) What is the largest bag I could carry on my lap in a wheelchair?

2) what is the ABSOLUTE DROP DEAD MINIMUM I need to survive for ... whatever, 12 hrs, 24 hrs. So assume you can resupply within that time.

Just a thought to assist.

buds-disability.bsky.social•52 days ago

This is something we've also been thinking about in the UK context, especially in the light of repeated scandals where the escape or evacuation needs of disabled people are not met by authorities. Let's keep in touch.

kegel7.bsky.social•52 days ago

Grenfell, a prime example. 😕😕😢

buds-disability.bsky.social•52 days ago

Exactly. And sadly a lot of other examples too.

broadwaybabyto.bsky.social•52 days ago

Oh I had forgotten about Grenfell. That was so awful.

broadwaybabyto.bsky.social•52 days ago

Yes definitely! I may write a few articles about it. The first would just be my experience and what made me realize “oh crap I need a plan”. Then perhaps some interviews or features with others? This is a big issue and we need support.

badcustsvc101.bsky.social•52 days ago

Grenfell is Exhibit A in my list of reasons I cannot live more than one floor above ground. I will not voluntarily sign up for risk of death in emergency due to inability to evacuate.

prairiescribe.bsky.social•52 days ago

I worked in a large building once and we had a guy in a wheelchair with limited use of his hands. The ‘official’ plan we were told to follow in case of an emergency with elevators not working was ‘put him in an office with a roll of duct tape so he can cover the doorframe and leave him.’ Arseholes.

vintagevegan.bsky.social•49 days ago

It ends up being the most immediate emergency items and then everything else has to stay put. We need a SYSTEM OF CARE! ♿️

idealthursday.bsky.social•52 days ago

I thought about this when I last traveled and how you can’t be “a light packer” when you have medical devices, injections that need to be kept cold, medications, mobility devices….

idealthursday.bsky.social•52 days ago

Adding on, my medical devices can’t be packed and used. It’s one or the other so if I needed to keep something ready to go, I need to have everything I use daily in it. A go bag ideally is kept to go at all times. You can’t keep medical devices ready to go at all times.

alayazbvegan17.bsky.social•52 days ago

I’m scared just because of my age and depleted energy (from loosing my youngest daughter last year)
I can’t even imagine what you’re going through.
But I’m rooting for you 🫂✨🦋💙
We’re all going to have to support each other and make plans.
I’m following you and hope to keep in touch 🦋

peterdavieson.bsky.social•51 days ago

I think the COVID pandemic taught us that countries, local authorities, hospitals, care homes etc ... don't really have 'emergency plans' for genuine emergencies that affect more than a handful of people.

The only gvt plan seems to be 'gaslight and victim blame'.

https://en.m.wikipedia.org/wiki/Exercise_Cygnus

fratboyamy.bsky.social•52 days ago

It is hard enough to manage my medications. If I were to suddenly lose all of them, and then try to get them to go through insurance early...nightmare situation.

rachelmalone.bsky.social•52 days ago

I recently watched a Y2K preparation video that included advice to ask your doctor for 2-3 months worth of medication for your emergency supplies. Yeah, right, like insurance companies would allow that these days. I am lucky if I can get my refill before I run out completely 😒😞

idealthursday.bsky.social•52 days ago

When planning a 2 week trip abroad, it took months of planning and coordination of my medications and pharmacies. I keep the extra meds from before they all started being packed because I am so scared it will be hard to fill them one day.

fratboyamy.bsky.social•52 days ago

And everything is a controlled substance now

rhiannok.bsky.social•52 days ago

We really need buses and trains and other non-private vehicles forms of emergency evacuation. I don’t own a vehicle so I’d be biking or walking. I don’t think my area has any plan

esmcslifer.bsky.social•51 days ago

Has everyone seen this tonight? They were waiting for an ambulance to evac them -- it never came. https://people.com/father-missing-a-limb-and-son-with-cerebral-palsy-werent-able-to-evacuate-la-fires-in-time-family-says-8772466

vintagevegan.bsky.social•49 days ago

🥺😢😢😢😢 🌈

beano77.bsky.social•52 days ago

Disabled people are a neglected part of our society. Their mobility is crucial.

energydeficit.bsky.social•51 days ago

I have put a gate in backing onto the train track so I can create a getaway via wheelchair in an emergency. I have zero trust in my local or state government. I don't even think there's a disability register

beano77.bsky.social•51 days ago

For a year I made an effort to include people in wheelchairs in problem solving groups. It was an eye opener. Every place we were to meet had obstacles.

energydeficit.bsky.social•50 days ago

The world definitely isn't built for us. I'm fortunate to have some mobility, otherwise wouldn't be able to even leave my own home!

beano77.bsky.social•51 days ago

Governments forget and don’t want to address issues that only affect a minority because it’s expensive.

mariecalaisart.bsky.social•52 days ago

Am not disabled just 80, cancer & mobility problems. Luckily recent weather events have been stay still because can't get out roads flooded. If fire & am very close to bushland am totally stuffed. Evacuation point right next to firebreak.

alabunmiamj.bsky.social•52 days ago

How do you define disabled?

mariecalaisart.bsky.social•52 days ago

Impossible question as very complex for each person. Government may have totally different idea.

alabunmiamj.bsky.social•52 days ago

Interesting take…

delightw2023.bsky.social•52 days ago

When I had to evacuate my building in August bc of a fire one of the biggest problems, even though this was the best of situations, was refrigeration. Meds were out of refrigeration for too long and became unusable.

broadwaybabyto.bsky.social•52 days ago

Ugh that’s awful! I swear we need generators for this purpose. But who has the money or the space when living in tiny unaffordable apartments??

delightw2023.bsky.social•52 days ago

Now I am keeping something that will keep things cold for a little while but still. I missed a dose of biologic costing thousands of dollars. My neighbor lost all her insulin.

broadwaybabyto.bsky.social•52 days ago

People have no idea how much these things impact us. And how expensive they are to replace (not to mention insurance hassles)

delightw2023.bsky.social•52 days ago

No idea at all

smollestbunny2.bsky.social•52 days ago

Fuuuck I need to buy a rechargeable, portable fridge

vidmaster.net•52 days ago

You want extra meds to keep on hand for that go bag? Or an extra ? Fuck you we already gave you one so insurance won’t touch it - enjoy paying full price!

jehane.bsky.social•52 days ago

I would need a bag just for my medications alone.

energydeficit.bsky.social•51 days ago

Absolutely. It's too difficult for me to even go to respite because it involves multiple trips. I can't begin to imagine prepping for disaster. Not least of all because many of the items required are disability specific & expensive

gardenjess.bsky.social•52 days ago

Part of it is starting to leave at go soon not go now & don't wait for go now to get out the door. What can be prepped is also ready for hospital admit. Also having places/people to go to - and check evac notifications for those places too. (It may not be obvs even if the sky is raining charcoal 😳).

radicalempath90.bsky.social•52 days ago

I’d think tops on that list would be a (very) nearby, (fully) able-bodied emergency contact (family, friend, reliable neighbor)… who will come running to help you in packing up whatever necessities are left and fleeing.

rachelmalone.bsky.social•52 days ago

My small town neighborhood is in a high fire risk area, and they have a community list you can add yourself to along with details like whether or not you are disabled, can walk, drive, have pets, etc. I am grateful since my husband is the only driver and is often at work.

radicalempath90.bsky.social•52 days ago

This is such a phenomenal thing to have — so proud of whomever came up with this!!

papawoof.bsky.social•52 days ago

Maybe this will help
https://bsky.app/profile/papawoof.bsky.social/post/3lfg44yiqak2g

anotherdaphne.bsky.social•52 days ago

Would you be willing to give up some privacy to be put on a list (held by, I dunno, maybe something like CERT groups) for expedited assistance in emergencies?

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