pulitzer prize-luminary commended author
INTERVIEWING THE PSYCHOGEOGRAPHER:
MAGGIE ORNSTEIN SPEAKS
"Gooble Gobble! We accept her! One of us! One of us!” is the haunting, unforgettable anthem from FREAKS, Tod Browning’s 1932 revolutionary, searing, cinematic masterpiece. It tells of a group of circus sideshow performers and their revenge upon a duplicitous non-sideshow trapeze artist, Cleopatra, who has betrayed one of their own. Per old-school carnival parlance, She is the “norm among the freaks.” (Norm meaning 'Normal.') The film is gorgeously groundbreaking in that the eponymous characters were played by actual people who worked as carnival sideshow performers and had real deformities. The movie belongs to an early filmic sub-genre dubbed "disability drama," which also includes The Unholy Three (1925), The Road to Mandalay (1926) and The Unknown (1927).
The chant of “One of us! One of us!” is delivered by the “freaks” to Cleopatra during a pivotal banquet scene, in which the group welcomes her into the fold. It ends, however, with her mocking and insulting the group, horrified that she should be branded “one of them.”
Now, before I continue, let me state that I find the word “freak” to be something positive. Empowering. Some might consider it to be a demeaning term for what is judged odd or profane, but to me, it symbolizes people who are strong enough to keep living and breathing in a world which rejects them, a world in which they can never truly be included. It is a powerful, positive word.
In my mind, we, the brain-injured, are indeed “freaks,” and I couldn’t be prouder of that. Many disability activists voice their dissension with the terminology – finding the word “freak” to be the height of negativity -- but I rejoice in it.
Whether we acquired our handicaps or deformities through life events, or whether we were naturally born with them, as is my case, our lives are unlike those of the “norms.” In all aspects.
So, as a brain-injured soul, I am loudly and proudly a “freak.”
It is not my intention, then, to offend when I use that term in a celebratory fashion.
Whew. Now that the disclaimer is over, I can move on.
The following is my fascinating interview with Magdalena "Maggie" Ornstein, who, like the character of Cleopatra in FREAKS, is a "norm among freaks" -- a non-brain injured woman working with brain injured folks on a regular basis. But that's where the similarity ends.
A self-confessed “psychogeographer “ of people with brain injury, Maggie led and moderated a brain injury support group I had joined here in New York City.
During that time, she allowed me to have a space to discuss our issues without the unnecessary judgment from the lens of an outsider, unlike other brain injury support group moderators, who were condescending, patronizing, and dismissive, as if shepherding a group of childlike fools, never understanding that we were adults who deserved empathy, compassion, respect, and above all, dignity.
I soon realized that Maggie, herself, took care of a person with brain injury: her mother, a survivor of a severe aneurysm. This is what gave Maggie the skills of kindness, compassion, and the respect we needed – and this is what made her not just an outsider, but "one of us."
AR: First off - I made the mistake of calling you a “social worker,” but I was told that was incorrect!
MO: I personally have not had many good experiences with social workers over the years and so being called one tends to make me angry! I think social workers have the possibility to change the way patients and their families are treated in the health care system, but not as they are currently positioned. Social workers should not work for institutions; they should work for the families they are supposed to be helping. Otherwise, there exists a conflict of interest and social workers end up serving theses institutions, often at the expense of individuals and their families. I like the idea of public health social workers who are politically aligned with the folks who need help and can truly advocate for change within the system.
AR: How would you define yourself?
MO: Well, I am interdisciplinary in every sense of the word. I am first a human being, then a daughter, partner, academic and professional in brain injury and family caregiving. I think people really tend to think of me as a caregiver and for that I am honored. I tend toward compassion and live my life in a way that attempts to show people that the way things are isn’t necessarily the way they need to be and to be an example of how we can do/ be different. For example, I did a home funeral for my grandmother. She died at home at 102 years old in the house she was born in and for us, this was just the thing to do. This was an important decision that I prepared for well in advance and it was an amazing experience. After she died, people came to the house to say their good byes and be together in the place where she had spent her life. When people heard I was doing this, some of them were skeptical, but after witnessing it, some even asked their families to do the same for them. I like to dance to the beat of my own drum as well as along with others who are also dancing their lives according to their own unique beat.
Like most things in life, I’ve been on a journey and I’ve ended up, academically speaking, as a medical geographer. I have a master’s degree in and teach psychology and am a psychologist at heart so I like to refer to myself as a “PSYCHOGEOGRAPHER.” It is a term I made up because it feels fitting. The pun on words is meaningful to me in that I often feel like a ‘psycho’ because many of my beliefs lie outside of the mainstream in many areas that are of personal and scholarly interest.
AR: “PSYCHOGEOGRAPHER!” Love it. Describe your work in the brain injury field.
MO: I began advocating for people with brain injuries nearly 20 years ago, immediately after my mother’s injury. I was spending every minute I could at her side while she was inpatient, which ended up being close to five years. During that time I fought every injustice I witnessed, whether for my mother or the person sitting next to her who was being treated in a way I knew to be wrong. I define wrong by asking ‘what if they were treating mom that way, how would I feel?’ Everyone is somebody’s mother, father, sister or brother and all need to be treated in a way we would want to be treated ourselves. I'm a stickler about that. From there, I worked for 15 years for the Brain Injury Association of New York State (BIANYS) as a family advocate. It was during my time at the BIANYS that I began facilitating support groups for people with brain injuries, which is some of the most rewarding work I have been involved with and has resulted in the nurturing of many very meaningful relationships with wonderful people.
My research focuses on family members/ caregivers of people with brain injuries and their interactions with the formal health care system. I have been involved with caregiving personally, professionally and academically for nearly two decades and am trying to re-frame the conversation around family caregiving to include difficult aspects of providing care that are a direct result of interfacing with a very broken system. In addition, I am interested in caregiving youth and young adult caregivers; segments of the population that often go unrecognized as family caregivers, and thus receive little support.
AR: Tell us about your background.
MO: My personal background set the stage for who I am today and what I value. I was born and lived as a child in the majestic redwoods of northern California. It was there that I developed trust in people, an extreme love of nature and deep appreciation for the care of people and places. I have several graduate degrees- in Psychology, Public Health and Earth & Environmental Sciences, which has given me a diverse and interdisciplinary approach to life. I bring aspects of each of these areas into all aspects of my life.
AR: What are the most challenging, and rewarding, aspects about the work you have done for support groups?
MO: The most challenging aspect of my work in the field of brain injury is people not getting the support that they need and even being treated badly by the system in place to help them. You seem to be asking specifically about support groups- the one of the most challenging is simply getting suitable free space in NYC. The challenges are the logistics and not being able to solve peoples’ problems, although that is not my goal, as many of our challenges are unfixable. The goal becomes how to live with the challenges in a way that is best for us. I think much of my work is bearing witness to suffering in a way that (hopefully) makes people feel more understood and a little less alone.
The most rewarding aspect of my support group facilitation is being able to share in the life experiences of people who have beaten the odds, usually many times over. I am perpetually inspired (cliché, I know, but also true) and amazed by people with brain injuries and their loved ones who I’ve gotten to know and how they are able to keep going despite the many challenges we are faced with.
AR: What are you doing currently?
MO: I am enjoying life with my mother as much as possible, struggling through the difficulties that come with loving someone with a brain injury and in the process of finishing my doctoral research, which focuses on the interactions between family caregivers and the formal health care system. My goal is to critique the current conceptualization of “caregiver burden”, which emphasizes and problematizes the relationship between caregivers (unpaid family caregivers) and care receivers (‘the patient’), but fails to recognize the difficulties families face while interacting and fighting with the health care system in all it’s various forms.
AR: How do you evaluate your involvement with, specifically, New Yorkers with brain injuries? The city can be overwhelming enough for most people, let alone those with brain injuries!
MO: NYC can be a difficult place for people with brain injuries, especially due to the over-stimulation of the environment, which can be particularly stressful for people with brain injuries. On the other hand, it also offers more in terms of treatment (if people can access it) and of course, cultural activities and transportation. It can at once be the best place and worst place to live, if you have a brain injury.
In terms of therapeutic process, I think it is important to allow people to feel and express their feelings and ‘get in the hole with them’; if that’s where they are, and celebrate and experience their joys with them, as those feelings arise, as well. Individuals are people first and with that come all the complexities of being human, with the added impacts of the brain injuries. I have found that existential crises come up often and this is not something that other groups will often discuss, in my experience. If people aren’t given the space to discuss whatever it is they want to express, they will feel squashed and angry. I try to always allow for honest discussion so long as it doesn't disrespect or upset others in the group. It is interesting also, that often the most difficult group meetings, where people disagree and talk through difficult and contentious issues, are often the most fruitful and rewarding as well. My goal is to facilitate a safe space where members can openly share what is on their minds and in their hearts, while surrounded and supported by caring individuals.
AR: What makes your story so compelling is that you’re both an outsider and insider in the world of renegade survivors: an outsider in that you, yourself, have not suffered from brain injury – other words, a “norm” -- and an insider in that you personally take care of your mother who has suffered brain injury. What are your thoughts on being considered an “insider’?
MO: I share the common experience of brain injury with folks even though I have not suffered an injury myself because of my very close involvement and living with my mother, who had a brain injury almost 20 years ago. I treat people with brain injuries as human beings and with empathy because it is something that is lacking in the TBI world as far as I can tell. Care and kindness go a long way in our very imperfect world. I have been told that I ‘get it’, which is the biggest compliment I can receive, and I attribute that to living with my mother, who has lived with a severe brain injury for many years. Without that personal experience, I don’t believe I would have as nuanced an understanding of the plight of people with these injuries as I do.
AR: Please describe what happened to your mother.
MO: When I was 17 years old, my mother suffered a cerebral aneurysm rupture in her frontal lobe, leaving her in a coma and on life support for nearly five months. She was inpatient for five years and I was with her every step of the way, literally, by her side every possible moment. She needed to re-learn everything, how to eat, walk, talk, read, and write. I was told that she would never come out of the coma, wouldn’t recognize me or be able to do anything for herself again. Now, while it is true that she is not independent because of her memory challenges, she has a good quality of life and I am grateful that she is still here with me, despite the difficulties. Independence and the ideology of the individual is something we, as a society, need to re-consider. I don’t believe it actually helps us live in ways that are best for the majority of people. None of us are actually independent. Human beings are social creatures. We need one another. When we are not able to do things we would like to be able to do for ourselves, our self worth can crumble under this ideology of the individual. I think it needs to be re-considered.
AR: How are things these days with her?
MO: I continue to live with my mother and have remained active in and an overseer of her daily life to ensure that she is as cared for and happy as possible. She beat all the odds. I remember sitting in the ICU and reading statistics about injuries like hers. I remember reading that 75% of people with what she had die immediately and of the 25% who survive, 75% of them die within a few weeks or months. Bleak statistics, to say the least, but here we are, 20 years later and she is enjoying a relatively good quality of life. She enjoys movies, playing cards and Scrabble, being outside, Chinese food and ice cream and gets to enjoy all of these things on a regular basis.
AR: What have been the challenges in being a caregiver?
MO: There have been so many, but mostly they deal with not being able to easily access the help we need, in the way that we need it. Most programs and services are so focused on doing things the way they do them, without asking if this is really what people need. There is a constant battle to fight for what is required, but also the desire to stay involved and a family unit with her while people are telling me I should ‘go live my life’, as if I’m not currently living my life. I resent this message. Also, people have no real idea of the amount of work and support that is needed ‘behind the scenes’ in order to keep the life of a person with brain injury running smoothly. Taking care of someone who can’t take care of you in return can get difficult and is tiring.
Family caregivers need reciprocity and we need to figure out the best way for that to happen. Also, people can lose their relationships with the person after the injury. For example, my mom can’t be there for me the way she would have been, emotionally, had this not happened to us. For me, that is very sad and I miss being mothered in the ways only a mother can. There is a big hole that can’t be repaired, but also, I think could be helped, if others were more aware of this loss and contributed toward our relationship in some way. I’m not sure if this is clear, but an example might be that my mom doesn’t recognize my birthday because she can’t think and plan in the ways required in order to have a celebration with me.
For example, she would have to remember that the day is coming, plan something- a meal or a present, but these are more steps than she is capable of and so I end up being the one to remind her that we need to do something special together and take the initiative to plan something for us to do together. Being solely responsible for this kind of planning and organizing becomes tiring over time.
AR: After taking care of your mother, as well as taking care of, well, us (people with brain injury) – what has been your outlook on life?
MO: This is a tough one! I think that I am so much more aware of the simple pleasures in life and in tune to what is important. Relationships and being with the people we care about and having time to nurture those relationships is so important, especially because we never know when they will be gone. There is a huge trauma that comes with each brain injury. It happens suddenly, without warning and changes everything forever. This requires significant change from all involved. For a very long time, and still a bit today, I wanted things to be ‘normal’, as in the way they used to be. This is impossible though, but without good support and fresh perspective, it is difficult to get to a place where we realize that we have to embrace the new normal and make adjustments so as to live the best life possible, pain and suffering included. There is a gift in all of this, something happens when you experience this kind of trauma so closely. I feel very lucky to have had the experiences I’ve had so early in life. I think it gives me more time to find enjoyment in the little things, which are often overlooked in our aspirations to get somewhere else in life. Do I wish this hadn’t happened to us? Yes, but I also know that the most difficult experiences are also usually the most rewarding and provide much potential for growth.
AR: What are your feelings in dealing with brain injury survivors and patients, including your mother?
MO: I think that I have been so deeply involved with brain injury for so long and it is so much a part of my being that I forget that it isn’t everything. Brain injury is consuming and for me, being in it, but not of it, is complicated. I can remove myself from the brain injury experience, in that I can be separated from my mother physically and so be away from the minute-to-minute experience of brain injury in a way that people with the injuries can’t.
However, I think that I carry much of my experience with brain injury with me always, and so I’m not sure that I can ever actually fully separate myself from the world of brain injury and all the complexities of it. It is interesting that you identify me as both outsider and insider and it is very true. It is a unique experience, being both and straddling that line. I am going to be thinking more about this now and paying attention to how the outsider/insider status impacts other areas of my existence.
AR: What do you feel is your karma?
MO: Well, I’m not sure. When things have been difficult, I’ve said ‘I must have terrible karma’ in order to have been dished out having to take care of so many people. In addition to my mother, I have cared for my grandmother in our home until her death at 102-years old, distant relatives, one with Alzheimer’s Disease and the other with serious chronic disease and for nearly a year was the foster parent to five-year-old twins. It definitely feels like my karma or my calling or my destiny is to take care of people, but I think my life lesson in this is to learn how to take care of myself, while also caring for others. One should not be at the expense of the other.
On good days, I know that taking care of people is one of the most difficult, yet fulfilling life experiences there is and I am grateful for the close relationships that result from taking care of others.
I don’t know enough about karmic debt, but do wonder what I did previously to get here and if I will learn my lessons this time around.
"one of us!" scene from FREAKS, 1932