Rest in Peace, Anthony Corona

I’ve just heard about Anthony Corona’s death in December. I have thoughts.

When I was in school to become a Developmental Services Worker, which is the certification most preferred by the Ontario government for those who work in support positions with intellectually disabled people, the curriculum didn’t include Crisis Prevention Institute’s Non-Violent Crisis Invention certification that most agencies required in staff at the time.

Content Note: Ableism, Restraint, Abuse, Neglect, PWD Death

Small, lit, white candle held in someone’s cupped hands lights the darkness. Keyword: Anthony Corona

Image Description: Small, lit, white candle held in someone’s cupped hands lights the darkness.

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The school I attended didn’t believe in the NVCI certification; its philosophy was that workers should absorb any violence directed at them by the people they supported.

I argued with my teachers about this; I didn’t think it was fair to potentially many people, depending on the circumstance. I had a rock-solid belief, supported by the NCVI philosophy, that restraint should be a last-resort measure. But I also wanted to be sure that if I found myself in a situation where a person I was supporting was agitated and at risk of hurting self, others, or me, that I had the tools to effectively de-escalate the situation, and if a restraint (or hold, as NCVI calls it) was the tool that was necessary — well, that was regrettable, because the situation ideally should been escalated before it got to that point, but if the person was so out of control that a hold was necessary then the analysis of how we got there could wait, because the safety of everyone involved was at that point the primary consideration.

Safety.

Which is partly why I was so upset to hear that after being held in restraint on his bus ride home from school last December, 18-year-old autistic youth Anthony Corona died. I didn’t hear about this when it first happened, but it’s come up again recently because the coroner found he died from positional asphyxia — he’d had his head held between his knees for twelve minutes, blocking his airway and circulation, and he died soon after the people restraining him had discovered he’d stopped breathing.

There is no excuse for this.

Corona, who was also intellectually disabled, seemed from accounts to be out of control when he was restrained — he’d thrown a half-full bottle of water at an aide and physically attacked another student. At 5’10” and 190 lbs., he was a large young man, but could have been restrained easily using a two-person NVCI hold, removed from the bus without breaking the hold, and held and periodically repositioned by employees (who could have spelled off by other employees, if necessary) outside the bus until more assistance arrived. He, the employees doing the hold, and anyone else in the area would have been safe, provided that the hold was being done properly by trained individuals.

CPI does not sanction (nor does any other system of behaviour management of which I’ve ever heard) forcing an individual’s head between their knees and holding it there for even ten seconds, let alone twelve minutes. This restraint caused his death by positional asphyxia — and the determination that autism and was a contributing factor needs to be struck from the coroner’s report. Autism is not a lethal condition, and the suggestion that behaviours exhibited by Anthony Corona (ones that the coroner has apparently linked to his autism diagnosis) contributed to his death is ableist victim-blaming.

Shame on the coroner.

I wish that I could see the police report, because several things have struck me as I’ve read media accounts of Anthony Corona’s death and events leading up to it on which I’d like clarification.

Restraint on the Bus

Anthony Corona was “harnessed” into his seat (this account also mentions that he was harnessed) for the two-hour bus trip to and back from Bright Futures Academy each day. Also, school president Becca Colucci said that students are seated on the bus based on their behaviours. Another Bright Futures Academy student on the bus told a reporter from the Press-Enterprise that staff often didn’t secure Anthony in the harness and that he knew how to slip out of it. Becca Colucci corroborated this.

Restraint should always be the last resort. Was a harness and chain (whatever role it played) truly the least restrictive option for bus transport for Anthony, given that it restricted his movement for a total of four hours a day? Was it fair not to give him the choice of with whom he wanted to sit (or at least near?) This institutional approach to transportation practically guarantees behaviour issues in people prone to them, especially given that, as the student mentioned earlier also told the Press-Enterprise reporter, staff generally could be “quite rough” with Anthony and seemed reluctant to deal with him. This points to staff-related issues around Anthony that needed to be addressed, for everyone’s safety, before we even get into what happened on the bus, particularly around putting a safety plan in place for both school and bus.

Anthony Corona’s Safety Plan

Even though Anthony was secured in his seat, if he had a propensity toward behaviour that could put himself and/or other people risk, a safety plan for that contingency should have existed so that in an acting-out episode, all staff know details like what holds are and aren’t authorized, when the bus should be stopped, what the other students should do and who should initiate that, who at the school should be called, etc. — in short, making sure everyone knows their role, has the information they need to perform that role effectively, knows from whom they’re supposed to take instruction, and what the chain of communication is. If they can’t get on board with the safety plan, they need to work somewhere else, because these plans exist for a reason: to keep *everyone* safe until the person is under control again.

Apparently a safety plan did exist. We’ll come back to that.

T here were 21 students on the bus the day that Anthony Corona died, with only 2 aides and a driver (even though there can be up to 6 aides on a bus.) Even if Anthony Corona was the only one on the bus whose behaviour the school considered a particular risk (and given that Bright Futures Academy serves “special education students referred by local school districts due to significant behavior challenges”, that’s probably not the case) two aides in this setting isn’t enough. Things must have seem stretched enough that a student felt compelled to intervene when Corona became agitated, which is absolutely inappropriate, and why there should have been enough aides on the bus to both safely de-escalate acting-out behaviour and clear the area to the greatest extent possible. If someone has become violent, other people need to be kept safe as well.

Now, the bus driver pulled over once he realized what was going on, and tried to help. However, it’s difficult to tell from media accounts what he was authorized to do. This article states that “Bright Futures staff were properly trained” before Anthony Corona’s death and subsequent restraint retraining for staff, so we’d expect that the bus driver could help out safely and effectively in this situation. However, the driver told the police that he was “unaware that Corona had a plan to control his behaviour”   Also, when the driver pushed Corona’s head between his knees, he was “trying something that his supervisor said had calmed Corona a few weeks ago”. The supervisor hadn’t reported the incident to the school.

In other words, he tried a new technique that presumably hadn’t been approved for use, with no idea of how it might interfere with what the aides were doing or how it might affect Anthony Corona (and, as a result, the people around him.) The aides let this happen despite knowing (presumably) that the technique wasn’t part of the safety plan.

For twelve minutes. This wasn’t a mistake that happened because someone made the wrong decision in a moment of panic. There was plenty of time to deliberate on whether they were doing the right thing, and they continued to use a technique that they must have known wasn’t approved.

Training

As history professor and disability activist David Perry pointed out, it wasn’t so long ago that Ethan Saylor and Eric Garner died for the same reason that Anthony Corona did —positional asphyxia. No trained person should have forgotten so soon that some restraint positions can be lethal.

When you get right down it, no trained person should figure that it’s safe to keep someone’s head pushed between their knees for twelve minutes. Shame on them and the people who “trained” them.

Shame On All of Them

The institutional practices, lack of coordination, and the assumptions both underlying and arising from both aren’t things that can just be apologized away, nor totally solved by the seat belt clips that the school bought to transport students more securely. Shame on Becca Colucci, for thinking that Bright Futures Academy’s “deepest sympathy” to the family and retraining in restraint for all bus staff are enough to address this. Apologies barely sufficed when an autistic student with epilepsy had a seizure and seriously burned his leg after allegedly being left unattended by Bright Futures Academy staff in 2015. When a vulnerable person that parents have in the care of your school dies at the hands of your staff (Colucci even told police that she didn’t believe that Anthony Corona was restrained correctly), retraining staff in restraint is only part of the answer — and the tip of the iceberg, really, because restraint should always be the last resort. Another part of it is the person in charge having the decency to resign.

And shame on the California Department of Education for not making Becca Colucci do it. Anthony Corona may have not have been someone that some aides at Bright Futures Academy wanted to deal with, but to his grandmother and aunts he was a family member.

Anthony Corona’s “crime” would have gotten a non-disabled student removed from the bus and bus privileges suspended for a period, or perhaps suspension from school depending on the severity of the fight with the other student; at the very worst, the police would have been called, but it’s unlikely that charges would have been made.

Corona, however, a young, intellectually disabled, autistic man, died.

Something to think about as we start Autism Awareness Month.

Rest in peace, Anthony Corona.

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As America Prepares for Hurricane Harvey, a Look Back: “Hurricane Matthew, Disabled People, Emergency Planning and Vulnerability”

I wrote this in 2016 about Hurricane Matthew (obviously) but am pinning it to the top of the blog for a bit because Hurricane Harvey has got me thinking about these things again.

Please stay safe, American friends.


Content Note: Ableism, Weather Emergency, Disempowerment, Inaccessibility

Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight. Keyword: Hurricane Matthew

Image Description: Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight.

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Because of the US election, I’ve been watching a lot of CNN these days. Last week I saw part of a press conference given by the governor of North Carolina, talking about what people needed to do to prepare for Hurricane Matthew as it moved up the coast from Florida. I was pleased to see that there was an ASL interpreter right beside the governor. And it got me thinking, yet again, about disabled people and emergency planning.

The only true weather emergency I’ve ever experienced was the ice storm that hit Kingston, Ottawa, and Montreal in 1998. I was living in a large house with 6 other girls at the time. I hadn’t acquired my disabilities yet. We were in our house the night of the storm, we spent the next night with my housemate Karen’s relatives because there was no power or heat in our house, and most of us left town the next day once travel because safe. If we hadn’t been able to stay in the house the second night, we would have gone to a shelter. Not a big deal.

It might have been if any of us had been in a wheelchair, or dependent in any way on nursing care, or on any medical supports that required electricity or water. Even at Karen’s relatives’ house, the power was still flicking on and off during the night that we stayed there.

But we were young, healthy, non-disabled, and immensely privileged. We didn’t give a second thought to what we might have done if we hadn’t been able to access help that we needed.

I thought about that last week, as I read an article by Direct Relief America about groups that will find it most difficult to get help during Hurricane Matthew. As I read it, I found myself getting alarmed; it was suddenly clear to me that it’s highly likely that the people most at risk during weather emergencies like Hurricane Matthew are disabled people.

Vulnerability During Weather Emergencies

Direct Relief identified four factors that put people especially at risk during Hurricane Matthew:

  • Compromised Mobility — The article discussed mobility not only in terms of a person’s ability to physically move, but also in terms of access to transportation and to transportation infrastructure (roads, bridges, etc.)
  • Poverty — Poverty tends make people more vulnerable doing weather emergencies like Hurricane Matthew in a number of ways, all of which can interact with each other to make the effect of any one (or all of them) more pronounced.
  • Health — People who take a lot of medication are vulnerable during weather emergencies because they may have to evacuate quickly and forget medications that may be (or become) difficult to get. Power outages may also mean that medications that require refrigeration will spoil. The Direct Relief article does talk about physically disabled people potentially not being able to evacuate, but doesn’t discuss the potential seriousness of being without required attendant care either in a home or a shelter. Direct Relief also identified hearing and visual disabilities as a potential barrier to receiving up-to-date evacuation information.
  • Language Barriers — The effect of language barriers begins with pre-evacuation announcements and can affect how entire communities receive important information. They can also “prevent residents from communicating with dispatchers and keep doctors from talking with patients in a triage tent.”

The article doesn’t talk about this, but in the high-pressure environment of a weather-related emergency like Hurricane Matthew, front line and medical staff may be less sensitive to the unique needs of disabled people (such as intellectually disabled people who may need more support to fully understand a procedure before consenting to it.) People with hidden disabilities may also find evacuation situations very difficult, as strangers may assume that they can meet expectations that their disabilities don’t allow them to, particularly in stressful times.

The Hurricane Matthew Venn Diagram That I Can’t Draw

I started thinking about all of this, and I know that the best way to show it is to draw a Venn diagram showing that these vulnerabilities intersect with each other and all intersect at disability, making disabled people one of the mostvulnerable groups in America in a weather-related emergency like the Hurricane Matthew landfall in Florida. I’m not very good at graphics, though, so I’ll have to try to explain it!

Compromised Mobility — It’s easy to see why compromised mobility is potentially a disability issue during an evacuation order. The mind goes immediately to wheelchair users (understandably), but people using canes or walkers, who are unsteady, or who experience pain when walking may have trouble moving quickly to get ready for evacuation or may be concerned that shelters in their area aren’t accessible (I’ve heard stories from friends in US about weather emergency shelters that weren’t, despite assurances that they would be.) Some disabled people can’t drive and must worry about how they will actually manage the mechanics of evacuation; this is especially true for disabled people who are very isolated from their communities, as we know often happens. Compromised Mobility intersects with Poverty — people living in poverty are less likely to have a reliable vehicle, which makes them potentially less likely to follow evacuation orders.

Poverty — In 2014, the poverty rate for disabled adults in America was 28% — over twice the rate for non-disabled adults. This 28% will potentially experience the vulnerabilities to especially hurricane emergencies, as identified in the Direct Relief article:

  • A tendency to live inland, in communities more vulnerable to mudslide and flash flooding than coastal regions (Intersects with Compromised Mobility, potentially Language Barriers)
  • Reduced ability to remain prepared for the expenses of a quick evacuation (Intersects with Compromised Mobility, Health)
  • Available emergency medical services quickly become overburdened (Intersects with Health)

When you have money, you have more options when you’re planning for these sorts of emergencies. Many disabled people do not have that sort of money to put away.

Health — I wrote about an evening where we lost power in my apartment building that made me question how well I’d get along in my apartment if the power was off for an extended period of time. I didn’t have a cellular phone at the time, and my landline ran through a wireless phone connected to base that didn’t work without electricity. I couldn’t send or check email. I was cut off. My father was in the same boat. Not a great situation for two people with health issues. I now have a cell phone and an emergency plan.

But there’s not much to it, especially in terms of evacuation, I’ve lived in my current town on-and-off for thirty years, and I’ve never known of an evacuation order being issued. But (intersection with Compromised Mobility) I have a health condition that prevents me from driving (a seizure disorder). If left to my own devices to evacuate, the shelter would have to be within 1.5 km (what I can walk) or a fairly short cab ride, and I could only take what I could fit in my travel backpack (probably enough for a week away from home — I’m a very good packer.) I don’t have meds that require refrigeration, I don’t require attendant care, and I could manage a non-accessible shelter if I had to. If I was to have a seizure, I generally have warning that it’s coming and know how to handle it and don’t require medical attention afterward.

I consider myself very, very lucky. It wouldn’t take much for many disabled people, considering associated health conditions and required medications and daily supports, to find Health barriers to evacuation overlapping significantly with associated with Compromised Mobility and Poverty, interacting with each other and making personal emergency response strategies difficult to both plan and implement.

Language Barriers — I think that Direct Relief was thinking about spoken language barriers when it wrote this section, but language barriers are certainly a potential barrier for disabled people — just because I saw an ASL interpreter at the Hurricane Matthew press conference doesn’t mean that all people on the teams involved in the evacuation process are ASL fluent, or familiar with assisted language technology, or even schooled enough in basic disability etiquette to know basic best practices about communicating with a hearing impaired person or an intellectually disabled person.

I have written in the past about my friend Ivy, who is intellectually disabled and also has a pronounced speech impairment. Even after our many years of friendship, I sometimes don’t understand what she’s trying to tell me, and we have to work it out together. Communication with officials and accurate understanding of messages about evacuation are crucial, and language barriers for disabled people are potentially just as difficult to navigate as for those who don’t speak the oral language(s) of the area.

Putting it Together

Are all disabled people vulnerable in weather-related emergencies? No. But there’s definitely a segment of the community that are going to fit into that place on the Venn diagram where Poverty, Compromised Mobility, Language Barrier, and Health all intersect, and those people are at grave risk of falling through the cracks in weather-related emergencies like Hurricane Matthew This means that people need to have personal emergency plans in place, but it also means that resources need to be available so that people can implement these plans.

It shouldn’t only be healthy, non-disabled people with the capacity to quickly and independently receive and understand all evacuation messages and the means to act on them promptly that can expect to get what they need to safely get through an emergency of any sort. This is particularly true in places where weather emergencies like hurricanes are common.

In all emergency planning, official plans need to address the needs of as many people as possible, including disabled people, who may face barriers on multiple fronts to getting to safety.

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Thinking About Disability – Getting Out of Bataclan Concert Hall

Like everyone, my thoughts have been on the attacks in Paris and the friends and families of the people who died. As others have observed, this feels like a game-changer, and it makes me feel…anxious, and sad. This isn’t same world, even, that I went to university in, and I wonder what it will look like by the time my two nieces and my nephew are fully grown.

I inevitably end up thinking, when something like this happens, about disabled people who may have been involved.

Content Warning: Terrorism, Paris Shootings, Aurora Movie Theatre Shootings, Fire Emergency

A picture of the Eiffel Tower in Paris, France, with a retro effect, with a heart icon like the like buttons used in social networks to depict the idea of liking the picture. Keyword: Bataclan Concert Hall

Image Description: A picture of the Eiffel Tower in Paris, France, with a retro effect, with a heart icon like the like buttons used in social networks to depict the idea of liking the picture.

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In the car last Saturday,  my father and I listened to a CBC radio program where the host interviewed someone who was in Bataclan Concert Hall when the shootings began talk about what he experienced as people rushed to get out, and as the surrounding area and Paris in general realized what was happening.

“I don’t know what I would have done,” I said to my father honestly, thinking at the time about where I would have gone once I’d gotten out of Bataclan Concert Hall and onto the street.

“Gotten out of the building,” he said.

Yes, okay, that’s a given. But I’ve since thought, would it have been that easy, as a disabled person?

Getting Out When You’re Disabled and People are Scared

I don’t know what the interior of the Bataclan Concert Hall looks like, so I’m making some assumptions. But, based on the layout of a typical concert hall, I think that I could probably have gotten out of Bataclan Concert Hall fairly easily at this point in my stroke rehabilitation, assuming best conditions given the circumstances. With my cane, I’m fairly stable and I can move surprisingly quickly.

Yes, I probably would have gotten outside. Assuming best conditions given the circumstances:

  • Assuming that in other peoples’ panic to get out I did not get knocked over
  • Assuming that it was a good day and I wasn’t feeling dizzy or otherwise unwell

But that certainly would not have been the case in previous years, and as much as I like to give people the benefit of the doubt, I do not trust that a large, panicked group of people trying to leave a concert hall would necessarily help out a stranger who had fallen.

Or assist a stranger in a wheelchair who perhaps couldn’t get to the wheelchair entrance/exit because that would mean heading in the direction of the shots.

Or assist someone with low vision who may not be able to move as quickly because he or she has to use a white cane.

Or find some other way of making sure that a disabled person that otherwise needs assistance during a situation like that gets it.

The instinct for self-preservation and the protection of loved ones kicks in. I get that.

I think it’s a complicated issue, because unless I’ve totally misunderstood the law, being in a venue like the Bataclan Concert Hall for an event doesn’t mean that the venue owner has the same amount of responsibility for your safety as would, say, the administration of the school that your child attends. Schools absolutely have a responsibility to make sure that all students, including disabled students, are made as safe as possible in the event of gunfire on school grounds, including going into lockdown mode – teachers can’t just leave because they’re scared for their own safety. I don’t know what employees did at the Bataclan Concert Hall, but I don’t imagine that many (if any) stayed out of duty to patron safety – why would they potentially risk their lives that way?

I get that.

(Please feel free to correct me if you’ve heard otherwise. There certainly are dramatic stories of employees risking their lives for no good reason to save others in a crisis.)

However, there are safety standards that all businesses must meet, and when they don’t and patron safety is affected because of it – they need to be held accountable. And while I’m not going to suggest that a comprehensive plan about what needs to be done in the event of terrorist attack needs to be Priority One for either entertainment venues like the Bataclan Concert Hall or the disabled people that visit those venues (because, after all, in the grand scheme of things these sorts of attacks are still extremely rare in the West) in light of the fact that the world *is* rapidly changing and threats keep moving closer and closer (have up already in a movie theatre, in fact, if you remember the shooting in Aurora, Colorado – not ISIS-related, but certainly shocking in its brutality) perhaps venue owner owners need to stop and reassess, in light of these latest attacks:

  • What are the possible things that could go wrong during a show, however remote?
  • What are our responsibilities to patrons, in terms of their safety?
  • Are we meeting those responsibilities for *all* of our patrons, at all times?
  • Why or why not?
  • If “no”, what needs to be done? What’s the plan to make the necessary changes?
  • Whether “yes” or “no”, how do we best communicate safety procedures to all patrons?

And I think that everyone, disabled or non-disabled, should be cognizant of variables that might make a sudden, safe exit from a public venue difficult, and have a general plan for dealing with it:

  • Limitations imposed by disability (slower movement) or by navigating a panicking crowd or a building that’s not accessible enough
  • Responsibility for others’ safety (babies, children, any other person/people who need/needs assistance)
  • A fear of something involved with any sort of emergency and/or a sudden exit that may getting out safely overwhelming or difficult to do. For example, if you know that you become overwhelmed in the face of fear and tend not take action because you can’t make a decision about what to do first, that could be a problem.

Disability, Specifically

I can see some people pointing out that the obvious solution to the issue of making sure that you can safely get out of a venue quickly if you’re a disabled person that’s perhaps going to need assistance is to go to events in venues like movie theatres or the Bataclan Concert Hall with a person that can assist you to leave safely in an emergency.  For an event like the Eagles of Death Metal concert in Bataclan Concert Hall, presumably most people were with at least one friend anyway.

But not necessarily. I’ve never gone to a concert alone, but I’ve certainly gone to movies and plays alone. I’ve got friends who can’t imagine doing that, but it’s never bothered me.

To those that make the “bring a friend” argument – that requires an assumption that everything that a disabled person needs to safely exit a venue in an emergency will be in working order – for example, that the emergency exit by the screen in the movie theatre has had snow cleared away from it sufficiently that the door will open. If the damn door won’t open, who cares whether a friend very carefully helped you wheel quickly to it?

As I said earlier, there needs to be a procedure, there need to be checks scheduled, and people need to be doing them.

Story Time

When I first moved into my apartment building, my name appeared on a list of people who weren’t to leave in a fire, because I couldn’t move very quickly – in all drills I was to wait for the fire department to come get me. A number of people in the building, especially elderly people on the upper floors, are to wait this way – they are evacuated from their balconies. This works because the building is constructed so that it’s very difficult for a fire to get out of the section in which it starts – a lot of thought went into protecting residents and making sure that they’re safe in their apartments for an extended period of time.

I don’t have a balcony, as I live on the ground floor. I now leave through the building’s front door by myself anyway, but I didn’t feel especially unsafe when I didn’t because I knew that there was a procedure and I saw by what happened during the fire drills that it worked. I trusted it.

But I don’t have that level of trust in movie theatres, or even concert venues. Sorry. If the manager of one (preferably more) of them is willing to show me an emergency evacuation plan for something like fire that includes procedures for ensuring that everything is set up so that all patrons are able to get out safely, including the schedule for how often it’s all checked to see that it runs smoothly, and evidence that people are checking it frequently…maybe I’ll change my mind.

Difficult Questions

It’s crossed my mind a couple of times since hearing about the Paris shootings that, for my part, if I’m worried about falling and losing valuable time in any sort of emergency in venues like movie theatres or concert halls like Bataclan Concert Hall , then maybe I shouldn’t be going to movies and plays alone.

That’s a hard pill to swallow, and the “victim-blaming” rhetoric of “It you don’t want this to happen, then you shouldn’t…” isn’t lost on me. I don’t like it and I’m not sure how to reconcile it as these threats, however statistically rare they are, require us to ask difficult questions about how we can make public places as safe as possible for everyone, and what role we all play in that.

It’s definitely something that I will continue to think about.

Thoughts and prayers are with the people of Paris.

 

 

 

 

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My Brain AVM: Taking My Meds

October is Talk About Your Medications Month, and I’ve been thinking about medications…and my brain AVM and stroke…and being one-handed…and a bunch of stuff…

Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand. Keyword: brain AVM

Image Description: Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand.

I took an anti-depressant on and-off through my life before my brain-AVM and stroke, but nothing else consistently or long-term. Now that my brain AVM is gone, I feel like I keep a pharmacy in the house – I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.)  Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they’re in bottles with child-proof tops.

I tried to find a YouTube video of someone actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it’s firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It’s easier to show you this, of course. The next time I have a visitor, I’ll get them to film me doing it, because after 14 years of doing this, it’s difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You’ve likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don’t I use a Blister Pack? It’s never been recommended, and I’ve never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don’t put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you’ve taken your meds. That sounds funny, because you’d think that you’d know…but these things get to be automatic, and when you live on your own and there’s no one around to confirm whether you did or not when you can’t remember because you’ve been on auto-pilot, it’s nice to know.

My Brain AVM, My Meds, and Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can’t answer that anymore. I’ve always been sleepy, and I’ve forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I’ve forgotten what it was like before I knew I had a brain AVM.

When I first started working, sometimes I’d get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I’m kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

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