How much input can those with lived experience genuinely have when the traditional “experts” have the balance of power in any decision making processes? Those with lived experience often don’t have the finances, the resources, the networks or the academic credentials to be truly “heard”.
Are they really being treated with the same respect as other experts or is it still “us vs them”? Stating that you will include the voice of lived experience is not enough. To genuinely include those with lived experience, you need to remove obstacles so that their voices can be heard.
This conversation is written from the perspective of lived experience input with emergency services mental health but it will resonate with many individuals trying to generate change from a lived experience perspective. We’ve deliberately used the term “my people” to represent a consumer group needing change.
Letter to Those Trying to Make Change
You say you want to help. So you organise a forum, or a conference, or a consultation. You say you’re doing this on my behalf.
I thank you for your concern.
You gather academics, helping professionals, organisational managers, sponsor representatives and senior leaders of organisations I have worked or volunteered for.
You will make decisions on my future, and the future of all those who stand beside me. In decision making land, you have deemed these people the “experts”. I and my people are the “consumers”.
You invite me to take part, to contribute my experiences. Thank you for your willingness to include me and take a part in decisions that will affect myself and my people. Where you are grateful to the experts, I get the distinct impression that I should be grateful for this opportunity to attend.
You get paid. I do not. I will have to take the day off my paid work. You offer to reimburse my travel expenses. You don’t see the irony that this will cost me money while all others present are being paid either by the organisers or by employer they’re representing.
I have listened to my people for years. I am their shoulder, I am their venting space. I listen. They have many suggestions for change so that their people stop this unnecessary suffering. Someone has to speak on their behalf. I do this in my own time, unpaid. Yet sharing my expertise with you comes at a cost to me.
I am one voice among many at your forum. Yet I am one voice FOR many in the real world. The gathered experts report in a language almost foreign to my people about the many projects they have completed with, or are planning for my people.
I speak about the issues and am met with your silent nods and a few looks of sympathy. I feel proud that I’ve spoken on behalf of my people, advocated for their suffering to stop, made suggestions for change. Then you ask the curly question: Where is the evidence of this suffering and where is the evidence that what my people suggest will actually work? Because the evidence before them ( from the experts) suggests other alternatives.
Evidence? I have letters from my people. I have recommendations from my people. I have survey results from my people. I spend every evening on the phone, email, and social media talking to my people. I have regular face to face meetings with individuals and groups of my people. Evidence?
Was my statement of 5 people taking their own lives in ONE week not enough evidence?
I am interrupted by the senior leaders presenting evidence that their new improved programs are working well. The academics mention they would like more money to study this a little more. Practitioners need more information so that their practices can be enhanced to include my people. Special grants are mentioned which would allow their practices to accommodate the special needs of my people. Sponsor representatives talk about their agendas and the kinds of directions they could fund. Those directions are irrelevant to my people, but not one of you seems to notice.
I become agitated but take a deep breath. Appearing emotional will allow you to dismiss my input as overemotional, irrational. I summon control by envisioning all the people who have asked me to speak on their behalf.
I am AN EXPERT when it comes to the problems of my people. I have lived it. I have overcome it. I know the obstacles. I know the resources. I listen to my people every day. They ask me to speak on their behalf. I have no alternative agenda. I merely seek to help others of my kind.
I sit amongst academic expectations, unwillingness of senior leaders to admit issues exist, directions conversations take due to biased sponsoring stakeholders and the financial burden of maintaining advocacy of my people.
You are not allowing my people a fair opportunity to provide input to their own destiny.
You may be convinced by experts that you’re doing the right thing, but until you LISTEN to those of us affected, until you help us to be on the SAME playing field as the historically perceived “experts”, you are only creating perceived solutions – not REAL solutions.
Invite me, or someone else who genuinely represents thousands of my people to EVERY consultation which involves our destiny. Give me the respect of financial remuneration and recognition as you do with other participants and speakers deemed to be ‘experts’.
Respect my knowledge and wisdom. I should not have to spend time and money gaining a PhD just so that you all trust what I say. I should not have to accept that your sponsors guide the direction of your work with their funding, or that the academic evidence isn’t quite ready yet and probably won’t be for many years.
I should be able to speak out loud about those who still work for the services but are threatened with disciplinary action or loss of job if they partake in public action or social media statements which criticize current systems. Or about those whose injury compensation payouts are all too often dependent on a clause which stifles their ability to speak out.
I have to be more politically correct, calm and collaborative than most of you because I run the risk of exposing that deep seated belief in many who are present that my mental illness must be playing up if I get agitated or express anger and frustration at some of your practices.
I ask you to do more than listen. Hear me. Because beside me are thousands of others, just like me. Experts. Shouting out for change.
Solutions come from those who you state you wish to help. They have lived it. They know the obstacles. They have worked their way through struggle. They know the resources. They know the solutions. They have the voice. They just need to be HEARD.
Thank you for stating that we- people with lived experience- have wisdom to share. To make sure we’re genuinely included in consultations which decide our own destiny – please remove the obstacles so that you and I, and all the people beside me – can truly collaborate and make meaningful changes. Changes in the REAL world.
Trigger Warning: A Chinese Father Saved More Than 300 People at Nanjing Yangtze River Bridge
“I understand these people. I know they are tired of living here. They have had difficulties. They have no one to help them.” – Chen Si
Since the Nanjing Yangtze River Bridge was first built in 1968, an estimated 2,000 people have died from suicide involving the bridge. According to data from 1995-99, in China’s first national survey in 2002, death from suicide accounted for 3.6 percent of the country’s total deaths. During that period of time, 287,000 Chinese people died from suicide every year, putting the average suicide rate at 23 per 100,000 people.
Chen Si, also known as The Angel of Nanjing, has been patrolling this bridge every Saturday for more than 20 years and has managed to save more than 300 people from death by suicide. He is a 52-year-old father from Nanjing, the capital of Jiangsu province of the People’s Republic of China. Following the loss of a close relative to suicide, Chen Si has taken up this cause because someone needs to.
A Long History
The relationship between mental illness and suicide is controversial in China. Those who follow traditional Chinese philosophy are not encouraged to express their feelings, nor are they encouraged to expect their environment to change to suit their needs. Therefore, intense misery and feelings of despair may go unrecognized, and suicidal symptoms are not easily detected by Chinese medical professionals. In fact, many doctors working in rural areas do not understand the symptoms of depression and often receive low salaries, which discourages more doctors from entering the mental-health field.
According to the World Health Organization (WHO) statistics, China’s suicide rate in the 1990s was 20 per 100,000 people. In the 1990s, female suicides were higher than male suicides by a factor of three. While China remains one of the few countries with a higher suicide rate among women than men, recent data shows that these disparities have evened out. In 2016, suicide rates among Chinese men and women came up almost even at 9.1 per 100,000 men and 10.3 per 100,000 women. Overall, China’s suicide rate in 2016 was 9.7 per 100,000 people, which was among the lowest globally.
A 2002 survey also revealed that 88 percent of females who died from suicide used agricultural pesticides or rat poison. Although China initially eliminated highly toxic pesticides to improve the safety of its farm produce, the elimination also had a substantial impact on the reduction of deaths from suicide among women. Research shows that men tend to attempt suicide through violent means such as hanging, whereas women tend to attempt suicide with medication. Overall, most studies indicate a decline in suicide rates among all gender and regional categories in China. The studies also recommended targeted suicide prevention programs, particularly for people in rural areas.
Women’s freedom, urbanization, and decreased access to toxic pesticides are key reasons behind the decline in suicide rates. According to Jing Jun, a professor at Tsinghua University in Beijing, “female independence has saved a lot of women.” The founding of New China in 1949 in combination with the opening-up policy in the late 1970s and the continuous growth of China’s economy has led to more equitable opportunities for women. Additionally, urbanization removed certain social constraints leading to more freedom for women. For instance, escaping an abusive partner or household may be easier in a city than in a small village.
Despite a decline in death by suicide rates in China, this is an area that we should pay more attention to. Chen Si acts as an angel, but he cannot do this work alone. He hopes that officials consider building a net across the Nanjing Yangtze River Bridge to prevent deaths by suicide.
The Crisis Intervention Centre, the first of its kind in China, was established by Nanjing Brain Hospital to provide psychological advice and support to Chinese people. The Centre also has a hotline, which can be reached at 862583712977.
The Lifeline Shanghai at (400) 821 1215 is a free, confidential, and anonymous support service that is open 365 days a year from 10am-10pm GMT+8.
Facebook and other social media platforms also offer many virtual support groups for individuals experiencing hardship. The National Suicide Prevention Lifeline at 1-800-273-8255 is a 27/4, free and confidential resource to support people in distress, prevention, or in an active crisis. Users should utilize the translate function on these web pages to adjust for language barriers, if necessary.
A 10-Year-Old Girl in Kenya Learns Coding in Milwaukee–Virtually.
The pandemic and a year of virtual schooling had an unexpected benefit for a little girl in Kenya who connected with Girls Who Code at the University of Wisconsin-Milwaukee.
“I use the computer for school, and I wanted to understand more about how they work,” said Elsie Maingi, who is 10 years old and lives in Nairobi.
However, computer classes in Kenya were geared to high school students and business people and were usually quite expensive, said her mother, Lilian Wangechi.
So in the fall of 2020, they turned to Google and found the free Girls Who Code program at UWM. Because of the time difference, Elsie got up at 2 a.m. for every class during that semester and the spring 2021 semester.
Encouraging young women
The national Girls Who Code program encourages young women of middle and high school age to get involved with computer sciences, according to Christine Cheng, an associate professor of computer science who launched UWM’s program in 2016.
“When we knew we were going to be online in the fall of 2020, it was a blessing in disguise because it allowed many people who were not living near UWM to attend classes,” she said, “but Elsie was the only one from a different country.”
Sammie Omranian, a graduate student and teaching assistant who manages UWM’s program, said she was amazed at Elsie’s persistence. “It was so surprising for me. I knew that she was from Kenya, but never thought about the time difference until her teacher, Anahita, told me.”
Anahita Qashqai, a graduate student who is one of the program’s teachers, also encouraged Elsie to overcome her shyness about using her English. Qashqai told her that English was also her second language since she grew up speaking Farsi. Another student piped up that her first language was Spanish. By the next class, Elsie had turned on the camera, unmuted, and was chatting away with her new friends and classmates from across the world.
“After that she felt more involved and engaged,” Omranian said. After falling a little behind for the first session because of the language concerns, Elsie quickly caught up. “Elsie was the only student who completed everything 100%,” Omranian said.
‘Awe for the amazing opportunity’
When the second class finished in the spring of 2021, Omranian sent Elsie the certificate and tote bag that all the students received. It took a few months to get to Kenya, but Elsie and her mom were so excited to get it that they sent a photo and a thank-you note.
“Today Elsie received her certificate from GWC and I can tell that it’s one of her best days,” Wangechi wrote in an email to Omranian. “I look back at the year 2020 and am at awe for the amazing opportunity my daughter got at your program. She had always wanted to understand how computers work and her dream came true.”
The UWM program was the perfect answer to their needs, she added, with the only requirements being an internet connection and the ability to go to class early in the morning.
“The program has opened a new frontier for Elsie that is boundless and she knows that her wildest dreams can come true. This is an experience as a parent that I could never have replicated,” Wangechi wrote. “We say AHSANTE (THANK YOU) to everyone who made this possible – the tutors, program coordinators and the donors.”
What is Girls Who Code?
Girls Who Code is a national program designed to encourage young women to enter computer sciences and other STEM fields.
In 1995, 37% of computer scientists were women. Today, it’s only 24%, according to Christine Cheng, an associate professor of computer science who launched UWM’s Girls Who Code program in 2016. The percentage will continue to decline if we do nothing, she told NPR station WUWM in an interview. “We know that the biggest drop-off of girls in computer science is between the ages of 13 and 17.”
UWM’s program attracts between 50 to 60 girls each semester, and offers three levels, depending on the students’ previous experience. The program is open to young women in middle and high school, though the majority are middle school age.
Graduate students in computer science and engineering are the teachers, along with some volunteers. Several young women who have competed the program have returned as volunteers, Cheng said.
While the program hasn’t had the resources to do a formal assessment of its impact, organizers do hear success stories from former students and their families. Makenzie Johnson completed the program in 2019, taking classes from the middle of her sophomore year to high school graduation.
Her mother, Tanika Davis, saw the national founder of Girls Who Code on MSNBC several years ago, but there were no chapters in Wisconsin at the time. She kept checking and eventually found UWM and Marquette had started chapters.
“Makenzie has autism and ADHD, but she was always good with computers and I knew that coding would expose her to see if that was something she was interested in and would do well in. It worked out really well,” Davis said.
Makenzie is now studying IT and software development at Milwaukee Area Technical College, with an eventual goal of becoming a graphic designer. She is also part of a program called Islands of Brilliance that helps people with developmental disabilities.
“Her mentors at Girls Who Code were great and really helped her thrive,” Davis said. “She felt like she was one of the gang. It was just a wonderful, wonderful experience with a diverse group of girls.”
Emma Maertz, a former student who is coming back as a volunteer in the program, said Girls Who Code is where she explored her love for coding and the program gave her the confidence to learn more elsewhere.
For this coming fall, Cheng and Omranian have decided to offer a combination of online and in-person classes.
Easy Strategies and Accommodations for Behavioral and Mental Health Needs in Learning Enviorments
The numerous accommodations and modifications that teachers make for students often amount to a lengthy list. These adjustments can involve altering not only instruction but also lesson materials, which tend to exhaust much of a teacher’s planning time. While circumstances, symptoms, and needs vary from student to student, there are some of the best “universal” practices that teachers can employ when a student is impacted by a medical condition, without causing a disproportional amount of stress to the teacher.
Symptom: Vision issues
Symptom: Working memory/memory processing difficulties
Symptom: Executive functioning difficulties
Symptom: Fine motor issues
Symptom: Behavioral issues
The classroom environment is filled with a countless array of personalities, abilities, and levels of motivation. Add to that the various medical considerations or chronic illnesses that students might experience and teachers no doubt feel stressed about making sure every learner receives what he or she needs in order to be academically successful. To ensure that students’ accommodations are met, every student must be provided with differentiated, personalized learning experiences to foster intrinsic motivation and appropriate levels of challenge.
Study Shows Immune Cells Against Covid-19 Stay High in Number Six Months After Vaccination
A recent study by Johns Hopkins Medicine researchers provides evidence that CD4+ T lymphocytes — immune system cells also known...
Poverty, Racism and the Public Health Crisis in America
Although extreme poverty in the United States is low by global standards, the U.S. has the worst index of health...
What Do You Know About Disability Cultural Competence?
Recently, I had the opportunity to give a webinar on disability cultural competence to social service workers, but was met...
Five Tips to Ease Kids’ Social Reentry
Pediatric neurologist Jane Tavyev, MD, has advice for parents looking to help their children learn social skills after pandemic isolation....
Mental Health8 years ago
Children Who Experience Early Childhood Trauma Do Not ‘Just Get Over It’
Social Work8 years ago
Ending the Therapeutic Relationship: Creative Termination Activities
Education5 years ago
5 Social Work Theories That Inform Practice
Social Work6 years ago
The Spiritual Social Worker: May Your Spirits Guide You