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Sweat, Tears, and a Prayer for Humanity

When I was in my thirties and my children were young I became very ill. I looked fine to most people, but I didn’t feel fine at all. I battled insomnia for about seven years. I was exhausted and severely fatigued. I ran on adrenaline most of the time. At the height of my illness I once went 23 days with only a few hours of rest each night, induced by Ambien. The pain was almost unbearable. My kids saved my life. Being here for them kept me going.

2008 photo by Kathy Nemeth Kayne

While chasing down my symptoms I ended up with several diagnoses. Fibromyalgia, Epstein Barr virus, and Chronic Fatigue Syndrome are the main ones that have stuck with me. It took me a while, but I had enough doctors ask me about my level of stress and push prescriptions at me to understand that I just needed to biohack my body so that’s what I did. At some point I realized that my body had stopped sweating altogether. I found this to be more alarming than the extreme sweating I had been doing throughout my heart palpitating fitful nights for the few years before. Not sweating didn’t feel right at all. So I went back to the hot yoga my mom introduced me to when I was in college. It took me a few months of just going into the hot room and laying on my yoga mat three times a week before I finally broke a sweat again. I never really discussed it with anyone, but I knew that it was something important. Our bodies are made to hold and release water. I’ve realized through my biohacking that my body doesn’t always do that very easily on its own. I wonder why.

I’m the same way with crying. I just don’t do it very often. It is something I should probably start tracking because it can’t be good for me. I’m certain it’s as important for my health as being well hydrated or sleeping. I wonder if the sweating and the crying are part of my same wiring? What I know is that the sweating was something new that happened when I was sick and was never an issue before. But I’ve never been a crier. I’ve always been stoic. Sort of unflappable. I’ve become curious about the meaning of this part of my human design.

Don’t get me wrong. I’m not a robot. It’s not that I never cry or that I don’t feel things deeply. I absolutely do. I cry uncontrollably sometimes. Just not very often. During my sickness I experienced a kind of crying breakthrough. I remember being at a museum with my kids and our friends. It was winter break and we had a good time with our friends. I had nothing particular on my mind as I was driving us home and then out of nowhere the tears just came. There was no reason I could think of, but it became clear that my body just couldn’t hold whatever it was in any longer and the water was coming out in buckets. As it turned out, I did release a bunch of emotions that I had stuffed deep down. My thoughts about feelings I had over the years that I didn’t even recall at all came spewing out of my mouth in what felt like projectile verbal vomit all over my now ex-husband. It felt like a kind of out of body experience for me and an unwitting assault on him.

I think back on the few times I have cried hard like this because I wonder how the tears sometimes feel like they rush in with such intensity and without control and then other times not at all. I have experienced a lot of pain. Anyone who really knows me can see this. But the things is that I don’t feel like crying. Why? Recently I began wondering if there is a specific therapy that would release me from this human design feature that just feels wrong. Surely, I have enough pain stored up for a few weeks of uninterrupted bawling. But nothing until about a month ago when suddently every day for a few weeks I had tears running out of the corners of my eyes all day long. It was strange and annoying. Enough so that that I thought about chasing down the symptom. But then it stopped as suddenly as it had started. Fascinating. I interpreted this symptom as my body telling me that I better get more water out even if I wouldn’t cry. I haven’t found cry therapy, so back to hot yoga I go. It’s so good to sweat.

Today I sat with one of my teenagers as they wailed at the world that has been so cruel to them, especially the last few years. I listened and I loved my beautiful child struggling with PTSD and I wept beside them. My heart ached as I listened to them wail about how humanity is lost. How they wish the world was just different. Given all we’ve been through over the last few years, I wish the same thing. What we have experienced and witnessed over and over again can make you lose faith in humanity. At least some of the time. I’ve been there. For me, I really just try to remain focused on the more immediate human problem rather than all of humanity.

What I see is that our school system is lacking humanity. So I pray for all of humanity that the adult human beings who are in charge of our schools will bring their focus back to the young human beings we are supposed to be educating. That’s all it really takes. Focus on humanity. In the meantime, I’m going to do everything I can to change it because there are just so many kids getting hurt. I know because I’ve got three of those kids myself.


I have faith that we can change the world if we can just focus on humanity.

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Public Testimony on 12/5/19

Public Testimony – Colorado Behavioral Task Force/Colorado Commission for the Deaf and Hard of Hearing and Deaf Blind

12/5/19

My name is Lisa Weiss. I am a children’s and disabilities attorney and an education policy specialist.  I am also the mother of a deaf teenager. Max is the reason I was asked to speak at this Town Hall meeting today and I want to thank you for giving the deaf community an opportunity to be heard. 

My deepest wish is for people to understand that deaf people are just like everyone else.  They are just people. I have found the systems in Colorado to be difficult because of this one thing. I know that the state agencies responsible for serving deaf people don’t understand.  This is not for lack of people’s good intentions. I know the people who work at these agencies care. It’s because of lack of exposure. It’s because assumptions are made about what deaf people need by people who are not deaf.  Over the last nine years I have witnessed the exclusion of deaf people in the meetings where their fate is being determined for them. To me, that’s the biggest problem. We need deaf people at every level of leadership and there are almost none.

I have the privilege of living with a deaf person and being a part of a deaf community.  I oftentimes work in predominantly deaf groups. I understand the barriers that exist when the communication is inaccessible.  I understand that inaccessibility is at the core of all of the struggles for our community. It is a barrier to everything. People are wired for communication.  It is a basic human need. It is the reason communication is a civil right. Without the ability to communicate there is no opportunity for meaningful understanding or connection.  For a meeting of our minds. What I wish people would understand is that this does not only affect the deaf person, this affects the whole group.  

What I also wish people could see is that for a person in an inaccessible community, this one thing often is the reason for their behavioral health care need.  Without access people can easily become isolated and withdrawn. We become depressed and anxious. I want you to try to imagine what it feels like to be fearful and to feel excluded everywhere because you can’t understand what is going on so you can’t connect.  It’s not that difficult to imagine that at some point you really only feel safe in your own home. That is Max’s experience and that is our family’s experience.

OUR SCHOOL SYSTEM IS NOT FOCUSED ON PEOPLE AND IT IS HARMING OUR KIDS

I want you to know that I was raised in our public school system.  I am a supporter. I moved back here when my kids were young because Colorado boasted of being a leader in deaf education and I wanted my kids to attend the same schools I did.  I wanted my kids to go to the schools where I felt safe. But this isn’t the same school system. Our school system is no longer focused on its mission. Kids. From my perspective, our childrens’ social emotional needs are ignored unless their behavior becomes disruptive.  Then they are restrained, suspended, or just pushed out and forgotten. There is little regard for our children, for our teachers, or for families.

Please understand that my experience is not just limited to Max.  I have three kids and I can tell you that life has been extremely challenging for my family.  All three of my kids have had adverse childhood experiences in the public school system and have been unable to attend school or have their needs met.  As a mom who has kids who are gifted and who also have disabilities, I can tell you that it has gotten to the point where it is nearly impossible to get kids like mine safely through our school system.  That’s because our school system has lost focus on the whole point of education.  

As for our deaf kids, I know they are being harmed. Their accessibility needs are being neglected because the systems of support haven’t ever been set up.  The services they need are too difficult and expensive for school districts so they just don’t provide them. I have heard often enough that parents are not complaining.  This is not true. I know that our deaf kids are being neglected because of systemic failure and Max has been traumatized as a result. Our family has endured a lot. Let me be clear.  I do understand that the accessibility needs are not just being neglected in the school system, but this is where I have been living until now and it is what I can personally verify. 

MENTAL HEALTH CENTER OF DENVER FOCUSES ON PEOPLE AND THEY HAVE COMMITTED RESOURCES TO ACCESS FOR DEAF PEOPLE

All that said, in terms of behavioral health care outside of the school system, I think I can fairly say that Max has been fortunate.  Especially relative to what I know about Max’s deaf peers. When Max needed it, I was able to find a private therapist who focuses on deaf adolescents and could work with Max. I didn’t have to worry about Max having access, which I know can take time to get set up.  

Now Max is fortunate to be recovering from PTSD and the effects of social isolation at school.  Max is benefitting from the programming at the Mental Health Center of Denver. There Max is able to participate in groups and activities with other teens.  That’s because MHCD has been compassionate and patient and generous. That’s because MHCD is focused on their mission. That’s because MHCD sees deaf people as people. 

What MHCD is also learning is that not all deaf people are alike. I have found this to be a real problem, especially in Colorado’s agencies. People need to understand that the deaf community is diverse. Deaf people speak. Deaf people use hearing technology. Deaf people use American Sign Language. Deaf people use something called Cued Speech. Deaf people use written language. There are many ways to communicate. The accessibility need varies depending on the person, the circumstances, and the setting.

THERE MUST BE A FOCUSED EFFORT ON THE DEAF COMMUNITY OR THEY WILL CONTINUE TO BE HARMED

Our deaf community is relatively small.  We are easily overlooked without focusing on us. The services we need are oftentimes costly for organizations to provide and most people do not even understand what we need.  

I want to encourage this task force to make this community a priority.  Organizations in Colorado must be supported to understand how to meet accessibility needs.  Colorado needs to build an overall system of support. It requires education and it requires dedicated funding.  Accessibility must be factored into every organization’s budget. And the system needs to call on a diverse group of the people in this effort who understand the accessibility need.  The deaf people themselves are the leaders we need. 

Thank you for your consideration.

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Whistleblowers

I have not been paying much attention to the impeachment hearings. I know to some people that probably makes me seem like I am out of touch and maybe I am, but I know myself well enough by now to realize that I don’t need the impeachment hearings running through my head every day. Besides, my husband is deeply into it and he is a human being who is designed pretty much like a megaphone crossed with a tuning fork. That means that I am really not missing out on much and it still stresses me out. It also stresses him out, but he’s not as protective of himself as I have learned to be. I just hope it’s all over soon.

I don’t blame my husband for his curiosity. Back in the day I myself was devoted to following the OJ Simpson trial and I got caught up in the news scrum after the 2016 election for a few months, so I definitely understand the entertainment value. For the most part I have never really watched the news. It’s just not for me. I prefer to read my news. I just don’t have that kind of bandwidth.

transparency.org

But I do have a lot of respect for the whistleblower and for the civil servants who have been testifying this last week. I’ve heard the term whistleblower a lot lately, but I don’t know if there is much attention being given to who a whistleblower really is. The legal definition of a whistleblower is “an employee who brings wrongdoing by an employer or other employees to the attention of a government or law enforcement agency and who is commonly vested by statute with rights and remedies for retaliation.” This is what I found when I looked it up just now in the the Merriam-Webster.com Legal Dictionary. Merriam-Webster Inc., https://www.merriam-Webster.com/legal/whistleblower. Accessed 23 November 2019.

What I think is that a whistleblower is simply someone who shines a light on something that they know is wrong. I know that it takes an enormous amount of courage. I’ve heard enough of the impeachment hearings on NPR while I’m driving around town to know that these courageous people are being portrayed as hateful. I just don’t see them that way at all. From my perspective, these people have been called to action from a place of love, out of duty and honor.

There is also one thing about these impeachment hearings that is a constant reminder for me. It is something that has come up for me over the years whenever Rudy Guiliani is in the news cycle. You see, I was one of Guiliani’s lawyers.

This really isn’t a big deal. I defended the City of New York under Guiliani’s administration for a hot minute almost twenty years ago. I was just a baby lawyer trying to figure out how to practice law. Truth be told, my 29 year old self didn’t even think very much about my boss and I never even met the person. But over the years whenever it has come up that I was a lawyer under Mayor Guiliani’s administration it has felt awkward. There is something about revealing this truth that makes me brace myself for the person’s reaction. Just a smidge. It’s because I never know what kind of an assumption a person might make about me based on this professional association. Especially now that everyone is learning so much about him.

Oy. Guiliani really is a hot mess.

I realize now having worked under other administrations that my connection to Guiliani has always felt surreal to me only because he has such a high public profile and I am just the opposite. It is in my nature to fly under the radar. What I know is that everyone is connected a lot more closely than any of us usually stops to realize. I am one degree of separation from Donald Trump. If you know me, that means that you have only two degrees of separation. This is the kind of stuff that blows my mind.

Wikimedia.org

The degrees of separation between human beings has long been fascinating to me. Pretty much ever since I saw the movie Six Degrees of Separation when I was still in high school. The theory of six degrees of separation is that any person on the planet can be connected to any other person on the planet through a chain of acquaintances that has no more than five intermediaries.

What I’ve come to understand about this is pretty simple. Our connections to people, no matter how distant they may seem, do mean something. The closeness of my connection to Guiliani and now Trump is a reminder to me that what I do does affect other people. It does matter. No matter how much you think it doesn’t, it does. We are all connected and we are all responsible for one another.

I just learned through a website about an organization called Transparency International and that June 23rd is World Whistleblower Day. Who knew?

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College Visits

I’m on a plane ride home. I was visiting a college with Max, one my 17 year old twins.

Honestly, the whole college visit thing is a little bit foreign to me. I really can’t even remember doing it myself at the same age. Unless I count the time I drove up to Boulder from Denver with my girlfriend and our two guy friends we had asked to our high school winter dance. I’m pretty sure getting stranded at a fraternity house after a party and sleeping on the floor of their older brother’s room shouldn’t be counted as a college visit though. It wasn’t my proudest moment.

The point is that I don’t actually remember looking at colleges the way I am for Max. When I was a senior I knew I was expected to go to college. I followed the path set out for me. Gap years weren’t a thing yet. I applied to a couple of in-state schools because that’s what my parents were willing to pay for. I was accepted to both schools and decided to go to the one where I slept on the sticky floor with my friends that one unfortunate night. I chose CU-Boulder because I knew I was going to have my friend as my college roommate. It was a good choice.

From my perspective, it doesn’t really seem like all that much has changed in the college choice process since 1988. The thing that has changed is amount of pressure on kids. And on parents. I don’t remember my public school friends applying to a dozen colleges like my friends‘ kids do now. Maybe I was just oblivious. It wouldn’t be the first time.

To me it just seems to be an exorbitant amount of stress that has resulted in parents getting too involved. I understand that parents are just worried about whether their kids will be able to manage without them. I get that. I talk to those parents all the time. We all know this. My god, there are celebrity parents facing jail time because of their messed up college choice process

Max

I’m not that kind of parent. I just am not interested in living that kind of hyped up, stressed out, competitive life. That’s part of the reason I moved back to Colorado from New York. I didn’t want anything to do with that pressure cooker. I didn’t want to raise my kids that way. I have never and would never encourage my kids to apply to a dozen colleges. I guess it’s because my own college choice process worked out just fine for me.

I think I am generally the same kind of parent to my three kids that my parents were to me and my brother. I assume that my parents trusted our capabilities or at least trusted that we would ask for their help when we needed it. They supported us when we really screwed up.

Choosing a school for Max should actually be pretty simple. There are only a few schools to visit because there are only a few that Max is interested in. They are the schools that have been recruiting Max for the last few years. You see, Max is deaf and wants to go to a deaf school. Or at least a deaf program. Max doesn’t have to go to a deaf school, but wants to. Not for the reasons that hearing people might think. Max gets along pretty well in a hearing school with effective access. Theoretically, Max could go to any college and get the communication access they need. But Max wants to be among their deaf tribe. I think Max needs it. People may never be able to understand what it’s really like to be a hearing parent to a deaf child. I often find myself wishing that we were all deaf.

The other day, the New York Times published an essay by a writer that Max and I both know. It was a cause for celebration in our world. Through her words she gave voice to so many of us who struggle with belonging in the deaf community. Like Max, the author is deaf with hearing parents.

One thing she wrote about was the fear some hearing parents feel thinking that deaf people will take their deaf children away from them. I do understand this fear. I have sensed it from hearing parents I meet and I have even heard it uttered by some of my friends. But I don’t share their fear and I never have. Here’s why. Max and I are bonded. We are as close as any mother and child can be. Just like I am with my other children. That’s because Max and I can communicate completely and naturally and without the need for hearing or learning any new languages. I can talk to Max at the same time I talk to anyone else and without changing my words or interpreting them into another language. That’s because we use Cued Speech.

Despite the bad rap that hearing parents get from some people in the deaf community, I am actually the opposite of these fearful parents. I want Max to go to deaf schools. I love the pride deaf schools instill in their students. It’s important. I do my best to instill this sense of pride in Max. Deaf schools would have always been my preference for Max, but it just isn’t as simple as that. The deaf schools don’t understand or normally provide access for deaf kids who use Cued Speech. They insist that everyone conform to using American Sign Language. It is not a language that has been easy for Max to learn.

Now as we take a good hard look at these few deaf schools, I am worried that the communication accessibility issue that should not be a factor at any school might actually be as complicated at a deaf school. These schools are recruiting my deaf kid yet deaf kids like mine face the same problems at these schools that deaf signers face everywhere else in our hearing world. Why should any deaf person be required to learn a whole new language before they can get an education at a deaf school? How does this make sense?

So I am happy to be visiting schools with Max, but it is not exactly the experience that most of my hearing privileged parent peers are having. I am visiting schools with Max to make sure that these deaf schools will provide my deaf kid with the kind of access they will need.

Max is not a signer. Max is a cuer. Max’s native language is spoken English. Of all the schools in our country, these deaf schools must be able to understand and accept deaf cuers because when it comes right down to it they are all in the same boat. Max is deaf just like anyone else who is deaf. And believe it or not, Max is not the only deaf kid in this situation.

I hope they will do the right thing.

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My 9/11

Anniversaries are a funny thing. Truthfully, I hadn’t even thought about the date today until a dear old friend posted a comment on my Facebook. Adam and I practiced law together in New York City and he is the one who reminded me of today’s anniversary. He is the one who reminded me to think about my own story from that day. Thank you, Adam.

Truth be told, I have not often told even my closest friends or family about my experience with 9/11. Some people don’t even know that I lived in New York City at that time. You see, there were other people in my life who had stories that seemed so much more important or interesting than my own. So on 9/11 I disregarded my own feelings and quickly, without a moment of thought, stuffed them down deep. That’s what I do. That’s what I’ve always done. I know it’s not healthy. That’s why I write now.

It took me a decade to finally begin valuing my own 9/11 experience. And it required therapy. My therapist did not even realize I had been impacted by 9/11 because I had so much regard for my ex-husband’s story that I disregarded my feelings about the experience completely. I had not being there guilt. I think she called it survivor guilt.

My ex-husband’s story really was powerful and it is also only his story to share. And at the time the world wanted to know about it. I can still recall the voices of Katie Couric and Oprah on our answering machine and the other end of the line. They both called our home phone in the hours and days after the tower was hit. It’s taken me a long time to realize that my own experience also has value.

Fortunately for me, when the plane hit the World Trade Center tower I was still laying in bed in my brownstone apartment in Brooklyn. That’s one reason why I thought my story had no value. I wasn’t even there. I wasn’t one of the people running away from a burning building, running through ash and smoke and chaos like my boyfriend, my friends, and my colleagues. And I wasn’t one of the people trapped underneath the World Trade Center, which is where I most likely would have been if I had gone into the office that morning as I had planned. That was where I was pretty much every morning when I went to law school and worked in Manhattan. The subway underneath the World Trade Center was where I ended my morning commute.

I had been on a plane myself on September 10th. I had taken a sabbatical from the stress of my job as a litigator for the City of New York. I had spent a month in France and then my boyfriend and I met my parents for a vacation in Hawaii. He went to work that morning, but I did not have immediate work to get back to so I was taking my time getting up. All of my active cases had been reassigned before I left and I had planned to go back into my office that morning to talk to my bosses. So when the tower was hit, I was still blissfully unaware.

I was alerted to the tower being hit by my landlord, Alba, a sweet and kind hearted woman from Colombia who lived downstairs. She owned the brownstone with her New York attorney husband. My boyfriend and I rented the apartment, which was the top two floors. A small closet in the hallway of our apartment provided the only access to the roof. I was finally roused by Alba pounding on my door so she could get up to the roof. She told me the tower had been hit and she wanted to see it with her own eyes. I did not.

Everything about that day is a little blurry and always has been. I turned on the tv as soon as Alba told me what had happened. What I could see immediately was that the tower was leaning and it looked like it was going to break apart and fall over. I was worried about my boyfriend who worked in the World Financial Center across the street from the tower. He called me twice shortly after and these quick phone calls reassured me that he was okay even though the tower had not come down yet. People had not started evacuating other buildings at that point. But I had heard his voice and, in my mind, that meant that he was alive. As much as that made no sense at all, that’s how I felt and what I thought as I moved through that day. He was okay. Everything would be okay.

I remember talking to a few people on the phone. My boyfriend’s sister. My mother. Instinctually somehow, I knew that I was never going back to my office. There was no reason for me to think this so it must have been from somewhere inside. I remember wandering around Brooklyn on foot. I remember going to an office store to buy a fax machine because I was going to be looking for a job. I remember lugging that fax machine home. I didn’t have a car. All I know now is that I felt sure that day that my life was going to be different. I had no idea then how much.

I did talk to my boyfriend again toward the end of the day, so I had been right that he was alive. He was trying to figure out how to get home. We talked about people he could contact. Places he could stay that night. I didn’t know then if he was coming home that night. Ultimately, he walked home and walked through the door looking as he always did after work, which surprised me. The only difference was that he had walked, that he was not wearing a tie, and that he had quite a story to share. And I just felt numb.

What I remember now about the days following was that it felt as if someone close to me had died, but there were no process for the death. No funeral. No sitting shivah. No mourning or grieving process that I could recognize. I knew a lot of people who were there that day. Of course, there were a lot of people who died, but I didn’t know any of them. All of my friends and colleagues survived.

Those first few days there were people calling trying to get in touch with my boyfriend. Important people wanted him to tell his story. He didn’t want to. He just wanted it all to go away. He began having nightmares. Neither of us was going in to work because our offices had been damaged so badly. And we really weren’t talking about it much at all. I think we probably just wanted everything to go back to normal. What was normal?

I wonder now if the death that I was feeling was a piece of me that died during that time. I couldn’t talk about my own feelings because I didn’t feel like I deserved to. My only story was his story. And he didn’t even want to talk about it with me. I wonder now if the death that I was feeling was also a part of us that died, him and me together.

There were real, tangible ways that my life changed after 9/11. At least, in my mind they were direct results of my 9/11 experience. Most importantly, the conception of our twins and later, my youngest child. I have no doubt that they would not have been conceived but for 9/11. For this, I am eternally grateful for that day.

God bless us all.

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Hope

Hope has been on my mind a lot over the last week as I think about what it must feel like to be my 16 year old, Mackenzie.  Despite everything that has happened to her over the last few years at school, she has practiced forgiveness and patience and has continued to hold out hope that people will do what they promise and what is right. I have always been patient and I realize that I tend to be a hopeful person, too. I think I’ve always been that way and maybe that has rubbed off on Mackenzie or maybe we were both just born that way.  I don’t really know how that works. What I do know is that we are both people who can be patient and who look for hope. The way I see it, these are qualities that weigh heavily in our favor.

People are very curious about Mackenzie, but they don’t always seem interested in the ways she needs them to be.  Right now they’re more interested in her gender identity. It’s the question I am most often asked. Even when I am in the middle of a conversation about what is most affecting her.  Her deafness. I get it. Not everyone has a transgender person in the family and it must seem like the biggest deal in the world to a lot of people. I guess it is a big deal, but not to me.  Not right now. Mackenzie is almost 17 years old. I’ve known that she didn’t fit quite right into the gender role she was assigned at birth since she was as young as six years old and I found her in one of my formal dresses adoring herself in a full length mirror in my bathroom.  I have a whole photo shoot of that moment. I need to find those images on my computer. She knew she was and she still is beautiful. It doesn’t matter whether she is called Max or Mackenzie or whether she wants to be called a boy or a girl. She is the same exact person she has always been.  I’m not here to tell her who to be and I never would. People praise me for this attitude and tell me how lucky Mackenzie is to have me as her mother. I appreciate that and I know that is true because I know that not everyone accepts their children for who they are. I just feel like her mother.

Don’t get me wrong.  I’m glad that there are people who are curious about Mackenzie and who support her and accept her, but what I truly wish is that people would take an interest in the fact that Mackenzie is deaf and she is being discriminated against.  It’s a big deal. It makes her really expensive to educate because she needs an interpreter at school. She is entitled to it under the law, but we have to fight for it ourselves. The discrimination against Mackenzie as a deaf person permeates every single crevice of our lives.  She has been traumatized. It hurts every person in our family. It’s hard when hope falls out from under you and you feel hopeless. It wipes you out and makes you feel depressed. That’s just what hopelessness does. That’s why hope is so important to me.

Mackenzie wrote something the other day about what it feels like to be discriminated against.  I read it. Yesterday she asked me if I know what it feels like. I don’t. But I know what it feels like to be the mother of someone who has been discriminated against.  It is hurting me deeply. I can only imagine what it feels like to be her. Now at a time when she is most vulnerable, she has been betrayed again by the same people who have been hurting her all along.  She just hoped they would fix the problem. It stands to reason since that’s their job. So far hope and patience haven’t worked out in this situation at all. Not for either of us. Mackenzie has been an educational refugee all year because she doesn’t have an interpreter.  It is a struggle to find any benefit for her at all in our schools. And she’s certainly not alone. The people who have hurt Mackenzie were supposed to teach her. It turns out she is doing the teaching. Mackenzie speaks up for herself. She doesn’t hesitate to speak publicly about how she has been mistreated because she is deaf.  She wants to call the police. She doesn’t understand how discrimination, especially against a child, isn’t a criminal offense. Why doesn’t the law work that way? She filed her own complaint about how she’s been discriminated against by the school system because it’s just plain wrong.

I was texting with Mackenzie the other day and she said that she was glad that it was happening to her instead of someone else.  I actually know that’s not exactly true. I’m certain that there are other deaf kids who are suffering in the same way, but I didn’t say that to her.  She feels like the only one right now. Instead I asked her why she was glad it was her. She said that it has to happen to someone for things to change and that she knows not everyone can handle it.  She said she knows she can because she has become so used to it. It felt like an arrow was shot straight into my heart.

I am amazed at her resiliency and so thankful for her.  She hugged me and thanked me yesterday for always being her rock.  I am thankful that I am strong and that she knows that, too. But it is the kids who are going to have to lead us out of this mess because the adults are just failing.  We live in an adult world where we have to navigate through lawyers. I am in awe of Mackenzie’s simplistic power.

And there it is again. There is always more hope when I look for it.  I love that about hope.

Community is the Solution

I don’t actually recall if anyone has said it to my face, but I know that some people think that it’s my own fault that I have so many problems. It’s impossible not to see that I have a lot of problems if you’re paying attention. I have three teenagers. And who doesn’t have a lot of problems? I’ve found that life comes with an endless supply. Some are more difficult than others and there are always solutions.

A good friend of mine recently explained to me that I have five karmic corrections. I don’t exactly understand that, but it does give me some relielf. My friend is able to see in me what I already know. My life is hard. Now I know that it’s in the stars. Karmic corrections. It’s a tangible reason that explains why my life is hard. Otherwise, it looks like a choice or it looks like it is my fault. And I always knew that it is not. Even if others don’t see it that way.

Sometimes I know that people assume that I make my life harder than it needs to be. I guess that is theoretically true and maybe even actually true, based on my own abilities and inabilities. I am not perfect. But what people are really thinking is, do I really have to fight so hard? Yes, I do. It’s my life and I don’t see giving up as a choice. I’m pretty sure now that my soul might just end up with a sixth karmic correction if I don’t fight when I know that I can. The truth is that not fighting is not something I would ever consider. It’s my life. They’re my kids. It’s my responsibility. They are my family. I am also intentional about always trying to do what I think is right. It is my foundation. And I was born this way. A fighter. I feel fortunate to be this way. And I am very aware that not everyone is able to fight the school system for their kids like I am. Not everyone can afford to. They can’t make the time. They don’t have the money. They don’t have the skills. They don’t know the law. Not everyone knows their rights. Someone has to do it. It’s the only way that change is made for others. It’s why I am a civil rights lawyer.

The truth is that my life looks like a mess because I’m open about it. I’ve never really been afraid to talk about it, but I am aware that sometimes it makes other people feel scared so until recently I have tried to keep it close. Only those closest to me know what is going on in my life. This is still true. I have a lot of people in my life who really don’t know anything about me. They see as much as they want to see. It’s just not always comfortable. I certainly haven’t often written or spoken about my experience until now, but I wish I had. Maybe I wouldn’t be so isolated. Maybe the trauma my family has endured wouldn’t have been so intense if we had more people who understood what we have going on and what we have been through. The truth is that is the reason I started writing and speaking. People need to know.

Another good friend says that now I’m living out loud. I guess that’s true, but it doesn’t feel loud to me. I just wasn’t born to be loud. I’ve always been quiet and observant. Stoic. And I have learned a lot. That’s what living a hard life does for you. I am grateful for this wisdom. My life is a master class I am here to share. Now I can’t seem to get my story out far enough or fast enough or wide enough. Or loud enough.

Because I am a well-educated, middle class white woman living in a good neighborhood, I live in a circle of people who can often afford private services, private therapists, private evalutators, private schools, private whatever their kids need. I’m not criticizing this. I can afford some of those things. I am fortunate. These things have become necessities that many people cannot afford. That’s why they suffer. I also live in a circle of people who were raised in a privileged environment themselves. They were fortunate in that way, but that has not been my experience. I know what it’s like in the public school system and so do my kids. Sometimes I imagine how nice that protective bubble must feel. I don’t have time for envy. I have to keep moving and fighting. Sometimes it feels like I’m treading water or running in circles. And I am known to take others’ hands along the way because I know they need the support. It is a lot and it is a choice, but I know that’s what I’m here for and I believe that we are all in this together. Privilege is irrelevant to me.

Here are the facts. The education and health care system data reports show that problems like my family is experiencing (i.e., trauma, illness, truancy, dropout) affects only those who come from challenging circumstances like poverty, homelessness, and addiction. I’m here to tell you that this is not true and that these reports give people a false sense of security. It makes people think that they are not susceptible to such unfathomable things. It makes people think that these things are only challenging for people who have always struggled with these things. People who are not white or middle class. People who are not privileged.

I’m here to tell you that no one is immune to these problems. I know that this is just part of life at the moment because I am living it. I know this because I haven’t met a parent with a school age kid in quite a while, particularly those in our public school system, who doesn’t have problems similar to mine. Perhaps I’m not telling you anything you don’t know, but I want to make sure you do so I’m saying it out loud. Our systems are failing us and it’s because they have not been built to serve our needs and because they are only focused on money and not on people. Our public systems are not focused on you or me. This is the same world we are all living in together.

That’s all the time I have today. I need to get back to it. Be safe and take good care of yourselves.

Peace and light always,

LAW

Mourning School Photos

I grew up in a home where my school photos from kindergarten through high school graduation were proudly displayed in a collage for all to see. It’s one of things I loved about my childhood home. My kids loved looking at those photos of me and my brother. My mom was dedicated to such things. I am grateful for that.

I strived to be like my mom in those kinds of ways and I still do. I felt really lucky when my own three kids were young because I was one of those fortunate people who didn’t have to make a living when my children were very young. Just like my mom. When my kids were little I was one of those moms who planned class parties and baked. I had every intention of filling up those photo collages of my three beautiful and exceptionally bright kids.

I can’t even find those frames anymore. And there are no school photos to put in them anyway. This fond memory has instead become a source of pain. The last few years of school have been a struggle. Not because there is anything wrong with my kids. There isn’t. But because there is something wrong with the system. They have all veered off track. It has not been easy.

I do have faith they will be fine and even stronger for what they have endured. I know they still have so much life to live. So much untapped potential. But I still mourn the childhood I imagined for them.

When I am feeling this way it helps me to remember that I am not alone and that this too shall pass. There is a very poignant essay that I have heard read often in my circle. It helps. It was written by a Sesame Street writer about raising her own child with a disability.

“WELCOME TO HOLLAND”

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Peace always,

Lisa Ann Weiss

Max’s poem “Goodbye”

My Poem~ “Goodbye”
by Max Tucker
Spoken aloud as public testimony at the Colorado Behavioral Health Task Force and Colorado Commission for the Deaf and Hard of Hearing and Deaf Blind Town Hall Meeting on December 5, 2019

Do you not understand?

Or do you not care in order to understand?

Or do you not know how to practice empathy 

and compassion in order to understand?

What part do you not understand? 

Is it everything?

Or do you not know?

Let me tell you something about myself. 

I don’t trust a lot of people

Yet not knowing them well enough

I don’t trust their words and behavior 

I can have a hard time trusting their intentions too

I have been excluded

I have been prejudiced 

I have been overlooked

I have my heart played with

I have been othered 

I have been lonely. 

I have been frustrated. 

I have been furious. 

I have always relied on myself

I have always had this complex smile on my face, 

although people don’t understand that it’s not a 

possibility that I’m going to always be happy. 

I know myself a lot better than anyone else does

And all I hear is despicable lies going through my

implanted ears and that triggers my brain. 

If people don’t understand, 

then the last thing that I wouldn’t

allow myself to see is people leading me on. 

What am I, some kind of doll?

What am I, a back up?

What am I, a naive person?

What am I, a pushover? 

What am I, a child? 

Well, I am done with everything.

I am not angry 

I am not sad

I am just  tired 

Just plain tired 

I am tired to listening

to other people’s perspectives

Or excuses

I am tired of people “correcting me”

I am tired of reading some people’s 

solid expressions on their faces 

I am tired of the stupid stereotypes

I am tired of people defining me 

I am tired of people acting like they’re

always righteous and superior
I am tired of myself feeling negative

I am tired of being promised 

I am tired of disappointing myself 

And being utterly disappointed in this world

I am tired of drama, exclusion or anything else.

I am not clueless

Just because I’m deaf doesn’t mean I don’t know how to read, damn it. 

I am not just reading people’s lips. 

I can read their body language, expressions and my surroundings. 

And I can read myself.

So I’m a lot smarter than some people thought. 

And I don’t need proof 

So I don’t care 

It’s not like I’m in a court case anyway

So better keep that in mind. 

I don’t care about anything anymore

I am only looking out for myself from now on.

And I will always do that. 

I don’t care about anyone’s reactions or words anymore. 

At least I’m trying not to

So be careful

Because that’s the conclusion and that’s final

I win in my life
And now that things are looking up,

I hope to keep that attitude forever.

Because if I’m not happy, then I will change things or cut ties off

with toxic people if that’s the reason. 

I will always look out for myself 

Even if the truth hurts

So the last thing to end this that I would say is that I don’t care about anything anymore 

I am putting myself first

Goodbye.

The Spice of Life

I’ve been thinking a lot about why we all don’t stand together. Even when we are in the same community of people. Even when we share the same religion. Even when we work together with a common mission. Even when we are family.

I think it must be fear.

I am in a few groups of people who live in fear. Either currently or historically or both. I have witnessed and experienced the effects of feeling excluded in these groups. And I have been outspoken at times about my feelings because it is my way. I am a truth teller and I am a writer. This is how I need to express myself.

My life has been hard lately so my truths are hard. I know that my words land poorly on some of the people I love. I regret that this has caused grief in my circles. It feels awful. Even worse, it hasn’t changed anything. If anything, it has made some of my relationships worse. And I still wish that the people I love would be open to receiving what I need them to know and simply understand that there is no blame and that there is no shame. I’m just asking to be seen and heard. I’m just asking for understanding.

What is a shame is when fear keeps us separated. Keeps us from being the community of people we really are meant to be. Keeps us from being the people we need to be for each other.

I know I’m not alone in this feeling because I talk to people all the time who feel the same way. I know a lot of people who are in groups where they feel they aren’t welcome. Where they don’t belong. But I believe we can all grow and I believe that we can all get along. I’m one of those people who believes that anything is possible. I am an optimist.

I believe there is always potential to live and work together. Even when we disagree. Even when we don’t look exactly the same or talk the same or pray the same. I believe our differences are what makes us valuable. I believe we can always find shared interest and can and should value others. We share family. We celebrate and grieve together. We have the same struggles. We are really all the same.

I was traveling recently and had the chance to spend a day in Springfield, Illinois. Honestly, the day I was in downtown Springfield it appeared as hot and dusty and dead as a city could be, but it was inspiring to me anyway. How could it not be? Springfield is all about Abraham Lincoln.

I spent a few hours taking in Lincoln’s presidential library and museum. His ideas, his thoughts, and his words filled me with fresh hope. One of his quotes has really been percolating since then and has been following me around ever since. In fact, there has been a billboard across the street from my house with the same quote. I am certain it must have been placed there to remind me. It states “A house divided against itself cannot stand.”

This is a fundamental truth.

I was born into an historically vulnerable community. I am Jewish. My father is Jewish. His parents were both Jewish. Their parents were both Jewish. They were all Jewish up my father’s line. At least as far as I know. My mother is also Jewish. She converted to the religion after she married my father. There has never been any question in my mind that I am Jewish, yet I have felt for years that I don’t always belong. I have tens of stories beginning in my early childhood about people who told me that they would not consider me to be Jewish or that I’m not the “right kind of Jew.” The different categories in the Jewish world are widely accepted. I was raised reformed. My husband was raised conservative. There is a commonly accepted difference between these two ways of being Jewish. This difference equates to an implied “less than”, but I have never understood why. How can we possibly stand together if we can’t even accept that we are all equally Jewish?

As a result, this concept of being different or less than while being the same has bothered me my whole life and has become even more frustrating as a mother. My children may appear different to some people. They are not. They are just like everyone else. And so am I.

One of my children, Max, is deaf. This fact automatically puts them and our family into a vulnerable, divided, and very diverse group of people. Just like being Jewish. Like most people who have no experience with deafness, I initially assumed that all deaf people were the same and that they must use American Sign Language. I quickly realized that this is not at all true. Unless you are a part of this community of people, you may never know that there are many different ways to live as a deaf person in the world. Signing is one way, but it is not the only way. It’s just the most visible to other people.

Max understands and speaks English. It can take some patience, but mostly it just takes paying close attention when you’re having a conversation. It feels to me the same as having a conversation with my 75 year old parents and neither of them are deaf. Max is also a native cuer, which means that Max understands spoken language most effectively when someone uses a visual mode of communication called Cued Speech, which is what I do. Max also does know how to communicate in sign, but it is not natural and it takes a lot of effort because Max was not raised with that language. In fact, it might come as a bit of a surprise to most people that most deaf kids aren’t. Max was raised and educated using spoken English. That’s because that’s our family’s shared language. It just made the most sense to me when I was trying to figure it all out.

Despite the fact that Max speaks the same language as most people they meet, Max is often feared by hearing people because of their deafness. This is just how it is with hearing people. They are afraid to be around deaf people because they are afraid they won’t be able to understand each other. This is partly because people assume that deaf people all use ASL. Max almost always feels excluded and can sense this fear so it causes them to withdraw from people altogether. Even from people in our own family. Even from people who love Max.

Many hearing people have pushed technology on Max because they think it is the best solution. It’s not. The sound processors that Max uses with their cochlear implants just don’t give Max the hearing that people assume it must. Max misses a lot of what is being said. This fact sometimes gives people the false idea that Max is not smart or capable, which is far from the truth. Max is one of the smartest and most capable people I’ve ever known. Why can’t people just understand that deaf people and hearing people are all created equal?

And then there’s the deaf signing community, in which Max also feels excluded and feared. Despite the fact that Max does sign, sometimes deaf people seem uncomfortable or make assumptions about Max because of the cueing and the speaking. Some people may feel that Max is not the “right kind of deaf”. They may have never been educated about Cued Speech at all and they can’t understand it. They also may not understand people who speak. How could they? The point is that Max does not feel they are welcome in parts of the deaf community. This really breaks my heart and I know this must be confusing to a lot of people, but it’s the truth. Aren’t all deaf people created equal, too?

All of this rambling is to say one thing. Our differences are what make us interesting and they can add value. If we were all the same in every way, life would be so bland. We may all be different, but in the end we are the same and we need one another. People are not meant to do life alone. It’s just too hard. Without the support of our own people, vulnerable communities like mine will continue to be so.

There is no reason to be afraid.

A Job Well Done

I have no doubt that my mom would be surprised to know that I think about her a lot. Certainly I think about her every day. Today is my mom’s birthday so I’m thinking about her a lot today. I want her to know how grateful I am for her. I don’t think she knows that because sometimes our relationship feels complicated. I think mother/child relationships are complicated no matter who you are. That’s just how it goes. It’s the most important relationship, so it’s bound to be complicated sometimes. That’s my working theory anyway. Take it or leave it.

Every year my mom’s birthday falls within days of or exactly on Mother’s Day. I’ve always wondered if that feels to her like kind of a ripoff. Like being born on Christmas Eve. I have a friend who was a Christmas Eve baby. I don’t think it ever bothered him at all. And I have a sense that it never bothered my mom that her birthday and Mother’s Day became merged into one over the years. My mom is not the type of person to want a lot of fuss over her. That’s the way I’ve always seen her anyway. I hope I’m right about that and I’m sure I’ll hear about it if I’m not. My mom is one who speaks her mind. We are a lot more alike than we are different. I’m grateful to be like my mom.

People talk a lot about how being a parent is harder now than it was when we were kids. It’s possible I have even said this, but when I really think about it I have to disagree. I think being a parent is just plain hard. How could we possibly know if it’s harder now? It’s all perspective really. It really is a lot of work and heartache, but that’s what you sign up for when you have kids. Isn’t it?

I remember when I realized that I would accept the job of mom if it was offered to me. That’s truly how I thought about it. I was in my last year of college when I realized that I would accept. At the time I was worrying that my birth control was not going to be 100% effective for me. That’s when I considered the job. Thankfully, I had my mom as a role model when I contemplated the requirements and she is an excellent mom. I am grateful. My mom sees me and accepts me for who I am. My mom always offers her support even when she doesn’t exactly know how she can help. My mom always wants to know what is going on with me even when the things I tell her must scare the hell out of her. Most importantly, my mom has never walked away from me. I’ve learned over the last few years that this is the most important job requirement.

I am truly blessed with a mom who has modeled the most important things about being a mother. My mom has never wavered. Even though we do not live close to one another and we do not talk to each other as often as we could, I think about my mom every day and I am grateful for her daily presence. I love her so much.

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