Tag: disability

Thoughts on Making Schools Safe

While sitting in the laundromat earlier today waiting for my clothes to dry, I was paging through the news on my phone. I saw an article from WPR that said Wisconsin schools are calling the police on students at nearly twice the national rate. Kids with disabilities, Latinx, Black, and Native students are the victims of most of the calls with Native kids at the top of the list closely followed by Blacks. The article made me ask again what it is that I love so much about my home state, maybe it’s my love of wanting to make things better.

While calling the cops on these kids might simply mean a referral for a child in crisis or a warning for some teenage action like yelling at teacher and aren’t by any means all arrests, it’s still hugely problematic that kids with disabilities and BIPOC youth are being referred to law enforcement at twice the rate as the overall student population and Native kids are three times as likely to be referred as white kids. It’s 2021 and we’re still operating as if it’s against the law in Wisconsin to have brown skin or to have a disability! Come on folks we can do better than this!

While I don’t pretend to have all the answers. I do think there are a few things that put together are worth considering.

  1. Take cops out of our schools. I’m not going to say that police are bad. I am saying that they have a role and that role is to uphold the law. By having them in schools that presumes that the law is not being upheld or is in danger of not being upheld. It tells kids that our expectation is that they will behave as criminals and that their space isn’t safe. Kids getting the message every day that they are criminals in an unsafe environment are more likely to act as criminals in an unsafe space.
  2. Support the support systems. A few generations ago black and brown children were stolen from their families to be sold in slavery or handed over to the boarding schools. Still, family systems remained and adjusted to care for these children. These family systems are under great stress as the dominant white culture continues to steal their children away through foster care, prison, drugs, and other tools. It’s important to recognize that families don’t look the same, nor should they, across all cultural groups. We need to see these systems and simply stop threatening them and stealing their children.
  3. Care for the educators. This is a simple one that we’ve all heard many times. Our teachers and school staff need the physical resources, time, and classroom support to do their jobs. They also need to be compensated for the work that they do. That’s it.
  4. Honor the bodies and spirits of our children. We are all impacted by what we take in. Our kids today are taking in a lot of junk. They’re fed junk on their plates in the form of processed foods filled with sugars and chemicals. They’re fed junk on the screens of their phones and computers all day long. They fed junk in stories about themselves as they’re forced to digest the history of the powerful that doesn’t represent them. All junk. How can we expect anything other than anger and frustration? Feed them goodness. Feed them good food. Feed them the stories of their own peoples. Tell them their histories of strength and courage. Feed them beauty. Give them the opportunity to run and play and explore the world or just the backyard. Feed their souls. Let them stretch their creative selves and find other ways of being beyond angry.
  5. Look at ourselves. These kids weren’t born angry or trouble makers. They were born cute and cuddly, adorable and sweet. We made them who they are. It is us who need to deal with our stuff. It is us who need to look at ourselves each day and ask ourselves how our actions are impacting the world. It is us who need to act.

The Gift of Going for a Walk

I’ve disappeared from the blog-o-sphere for past few weeks. In fact, I’ve disappeared from quite a bit of life but with good reason. You see, about three weeks ago I was laying in bed watching Netflix when suddenly I had a broken ankle. Seriously, that is the truth no matter how strange it sounds. It’s not clear how my ankle was broken, but as I was diagnosed with epilepsy about six years ago, there’s a good chance I had a seizure. I don’t have seizures often, maybe two or three a year. Usually they just leave me with a headache and a sore tongue, but this one didn’t give me a headache at all, didn’t really hurt my tongue either, but it impacted me in other ways. That is, of course, if it was a seizure. There’s still the possibility that it was my dog jumping up on the bed and landing on me. My memory suggests that may have been what happened. My dog’s size, about 35 lbs, makes it pretty impressive that he could cause that kind of damage.

It’s been an interesting journey. The injury happened Monday night. When the pain wasn’t gone and there was some swelling, I decided to go into urgent care on Tuesday. The staff were pretty amazed that I was walking on a broken ankle. I was a bit surprised to learn it was actually broken.

They gave me a cool moon boot and crutches and sent me home to rest. I slept for about a week. It is amazing how much energy it takes to heal. That first week really sleeping was almost all I did. By week two the swelling was down enough that it was time for surgery. I thought with just a block of anesthetic behind my knee that I might get to experience the operation in a conscious state. I didn’t. I slept. Then I spent the night in the hospital so they might monitor for seizure activity. There was none. I did learn that I do not like percocet. Heavy duty painkillers are horrible things. I took it once and refused it thereafter. I really didn’t have any significant pain. At that point, I actually couldn’t feel my foot at all yet so it made no sense to me how the hospital staff kept trying to push painkillers that set my motion sickness into high gear. I couldn’t move without feeling nauseous.

After a few more days at home with my foot up I returned to the doctor and got the okay to return to work with my walker. That’s been the true gift. Before this accident I walked to work, and most everywhere else, every day. In my little town of about 5,000 people, I would typically put on one to five miles a day just doing what I needed to do. Right now, walking a block with my walker is significant exercise. My ankle is healing fast and I’m hoping to get back to a more normal routine in the next month or two, but this is where I am right now.

I find myself thinking a lot of some old friends who taught me about accessibility from their wheelchairs. I am especially thinking of Mark. He was a volunteer when I worked for the Grassroots Leadership College. He had severe physical limitations. I remember him apologizing once when he was late for his shift. He told us how when it was raining the bus drivers would often pass him by. They didn’t want to get wet helping him board the bus. That was just one little example of how the world treated his disability. There were too many others. Eventually, he had enough. He rolled himself down to the lake, propelled his body out of his chair, and landed face down in the water and ended his time being discriminated against.

My experience is nothing like his, but it has been a gift to look at accessibility issues and at how I see myself in this world of varying abilities.

First, I kind of have to laugh at myself. I found myself thinking the other day, as I was trying to open a heavy door without losing my balance, “this would really suck if I really had a disability!” Okay, now I am traveling around on eight screws and a plate, using a moon boot and a walker, because of a broken ankle that was quite likely caused by a seizure. Some might say I have a disability. I don’t really identify with that. It doesn’t make much sense to me. So, there is that, the whole question of what is it to have a disability in the first place? Who gets to decide who has a disability? Why do they have that power?

Then, I have to say “god bless the elders who do this in snow or on hills!” I live in Minnesota so I am thankful that my injury didn’t happen just a few weeks later. Did you know that if you hit a crack in the sidewalk your walker might veer off the wrong direction? Or did you realize that walkers really don’t have very good brakes and can start speeding along on even the slightest incline? I have the gift of being an in shape and strong middle aged woman. I can handle these challenges pretty easily. But, it’s tough for me to imagine what it’s like to use a walker if you don’t have the upper body strength or the sense of balance.

I’ve fallen a couple of times since I broke my ankle. I’ve been able to lean into my fall and land gently. Still, I think to myself what more damage could have done to the already broken spot? Or, thinking again of our elders, I wonder about my hips. It seems that for too many the broken hip is the kiss of death. I have two small steps going into my house. Normally, I barely notice them. Now I realize that they could kill someone.

I’m learning the little things about accessibility from a different perspective and it’s good for me, good for us, to know. One of my first lessons was on my first day back to work. I had to go to the HR office to drop off some files about the incident. HR is on the second floor of Behmler Hall. I’ve worked on campus two years, but don’t go to Behmler all that much. I knew there was an elevator, but I wasn’t sure where.

The bus dropped me off not far from the front entries to the building. It was then I really noticed that both of the main entries have stairs. I had to go down the hill alongside the building to come in a back door to find the elevator. Going down the hill I was thanking my lucky stars that there wasn’t any ice yet and wondering how people make that trek in winter. I also thought about how I’ve been on campus for two years and I had to search to find my way. I wondered about people coming to campus for the first time. How can you feel welcomed if you can’t come in the door?

Thinking of doors, I never really realized before how heavy doors can be. I also never really noticed how often there are buttons on exterior doors to open them, but once you’re in a building interior doors often don’t have that access tool. The building that I work in has, what I had always thought were accessible restrooms. They’re big with room to turn a wheelchair, the sink, soap, and hand dryers at good height. I think there’s even a bar to help getting on and off the toilet. But, those doors are heavy as heck when you’re balancing on one leg and using a wheeled device for mobility.

My experience thus far has been a simple one and there hasn’t been much that I can’t find a way around. I have been given the gift of hearing stories though. I know that there are people on campus who’ve not taken on roles that would both benefit them professionally and benefit the campus community because of the challenges of access in some of our campus buildings.

Sometimes people fight for access and sometimes they decide to just take a different route in life because we can’t all be fighters all the time. Sometimes we just need to live.

I encourage my friends to notice the steps, think about the weight of the door, look at where the furniture is placed, acknowledge the shelves and where supplies are kept. Note these things. Decide for yourself what is acceptable and change what is not.

Challenges and Gifts

My father will turn 90 in just a few days.  Family is gathering for the party tomorrow.  I’ll be 500 miles away.

That wasn’t the plan.  The plan was that I’d drive home yesterday, spend a little time with friends along the way, then head for a weekend with family.  My body, well actually my brain, changed the plan.  I have epilepsy.  I was diagnosed in 2013.  My seizures have been well under control, but one showed up a few days ago and I had to set down the car keys for the next few months.  And, I had to take a few days to just rest and recover.

The good news is that it encouraged me to pick up the laptop again.

I don’t know why I have epilepsy.  I come from a large family and I am the only one with this challenge/gift.  I can hypothesize a list of possibilities, and I have many times. But, the reality is that it’s here and I get to live with it.

Why write about it?  Well, because it is a gift and gifts are good to share.  What? Epilepsy is a gift? No way!

I will admit it’s not a gift I would have chosen and if I had the receipt I would most definitely return it, but it is a gift.  Here are just few reasons why I consider my epilepsy a gift in my life.  I wonder what unexpected and perhaps unwanted gifts life has given you?

  1. It’s helped me look at the temporary nature of life to better understand that there was a time without me and there will be another time without me.  That’s ok. Now is my time to be alive.
  2. It got me to take pause to take care of myself.  I’m now a whole lot more conscious of when I need to just relax.  I’ve totally changed my diet, lost a lot of weight, and feel much better and happier.
  3. It’s helped me empathize with the experience of others.  Seizures scare people.  They also sometimes limit some of the things that I am able to do.  Epilepsy is covered by the Americans with Disabilities Act.  So, I am told, by the law, that I now have a disability.  Some days I agree.  Some days I don’t.  But, I do know that I have a better understanding of how both my brain and societal rules create limits.
  4. I have found great support.  I am a lucky one.  I have a strong family and friends that don’t run when they get scared.  I’ve also been able to find some excellent online support groups that have added to the group of people that I have that understand.  How amazing is it when people stay with us through the our rough spots?
  5. It’s continued to inspire my work to encourage healthy living both as individuals and as community.  My experience simply reminds me that we need to take care of ourselves individually and as a community if we’re to survive and thrive.

What challenge/gifts inspire you and carry you forward?

Thinking Deep at 4am

July 18th, 2013

A few weeks ago I had a seizure. It was a night like any other until I went to sleep. I had just gone to bed when my housemate heard unusual noises coming from my room. When I didn’t respond to her calls to me she looked in on me. She found me having what appeared to be what is now known as a generalized tonic-clonic seizure. They are more commonly known as “grand mal.” Because the seizure lasted several minutes and I appeared to be having trouble breathing she called 911.

In Madison we do 911 calls with style. They came with a firetruck and ambulance. I regained consciousness to see half a dozen uniformed men and women surrounding my bed. The really good looking guy was in charge of asking me questions. I did my best to answer those really tough ones like “what day is it?” Who knows what day it is when you’re awoken in the middle of the night? It’s tough to answer questions when you’re struggling to form words and figure out where you are and who these people are.

They decided to take me in to the ER. My housemate, Jennifer, met us there and helped me understand what was happening and was my advocate.

The days following that event were really tough. First, of all dealing with the migraine that came along with the two seizures that I had that night and all the other physical side effects. Secondly, exploring all the fears and new understandings that arose as well.

My family and friends have told me how lucky I was that Jennifer was there. I definitely was lucky. I’d thought for months that I might be having seizures. Now I have proof and can figure out how to address them. On the other hand, however, had she not been there I would have slept through it and just woken with a nasty migraine and nothing to fear.

So what does this have to do with organizing?

Lots I suppose. You can’t deal with the issues until you know what they are and you can’t change them, can’t win until you face the fear. It’s also a reminder to me that I am not permanent. There was a time before me. There will be a time after me. Some day my eyes will close for the last time and there’s a good chance I won’t know it.

How do we continue to do the good work with that knowledge, with a recognition of our miniscule space in the grand realm? Again I have no answers.

I do know that over the years I’ve had hundreds of conversation about burnout, trauma, stress, depression, and hopelessness as a part of what we do. I’ve been a part of many efforts to address such things. Some have helped. Some simply died away themselves.

I know that I struggle with those same things sometimes. I find myself losing my ability to feel the passion that I once felt. I am often left with just sadness and emptiness. I both miss the passion and am thankful to not have that intensity that has worn me out. Still, I look for ways to maintain and build my ability to feel and embrace and love this world and its beings.

We, as activists, organizers, and educators, need to figure out how to not just support others but support each other and ourselves. I find the last the hardest. There is always someone else who needs care, who needs support, who needs strength. They don’t jump in front of me in the line to receive care. I step behind them, push them forward. It’s easier to address another person’s needs than my own.

Tonight, or rather this morning I’m staying awake. I have to. I am going to get my brain scanned in the morning to see why I had those seizures. I have to be in a sleep deprived state. In a little more than an hour I will have been awake for 24 hours straight. Surprisingly I still feel quite awake. In fact, I’m going to take a shower and go for a long walk with the dog when I’m done writing this. It’s been a while since either of us has seen a summer sunrise.

I hope to learn something there that will help me move toward caring more for myself and through that care rebuilding my passion. I ask my fellow activists, organizers, and educators out there, don’t wait for the seizures and brain scans. Show yourself that love and caring that you save for those you defend today and every day. If we are to be in this work for the long haul, we need to be here for the long haul.