Peerly Human: Facing the Facts of Life: How Lived Experience Affects Well-Being

The fact is, life is challenging - and that explains a lot. Yeah, I know. We've been told we have brain diseases, chemical imbalances and that our problems are biomedical. But what about our lives, experiences, and stories...? Where do they come in...? And what about the stress of living? How do you tell a hard life from a disordered one...

Here is where the rubber meets the road. While we don't talk about it much, on some level we all know that life is precious and fragile. To create a single human life, nature arranges for nine months of specialty-design, comfort-padded, round-the-clock guarded, protected and optimally-adjusted physical space. Once out of the womb, there are several years more of intensive care and nurturing that new arrivals ideally get in order to ensure optimum development. The refuge required is not only physical, but also economic, emotional, intellectional, social, cultural and spiritual.

In other words, it's complicated, labor intensive and a lot can go wrong. There is no way around it. We are all vulnerable. If any of us lives long enough, there will surely be setbacks and losses. Even worse, the one clear certainty, at the moment of our birth, is that someday we will die. It's only a matter of time.

Add to that the kicker that no one actually has 'the answers' - real answers - to the problems that have plagued human beings since time began. Yeah, there are a lot of theories and philosophies that help people cope with death and loss. There is a lot of religious and social wisdom about how to avoid, escape or transcend the material realities.

No doubt, some approaches hold more promise than others. At the same time, on the tangible, visible planetary level, no one really knows. Everyone has done their level best. Countless, scientists, academics, philosophers and saints have devoted their lives to the search for this holy grail.

Yet, no one has succeeded. As a whole, for the human race, we still have more questions than answers. This is especially true when it comes to the really hard questions - the one's that really matter:

Why is there suffering?
Why do bad things happen to good people?
What happens when we die?
What happens our relationships with the people, animals, beings we love?

In the final analysis, there are no experts. We all end up the same. Ashes to ashes, dust to dust.

Despite its current popularity, all of this is a bit of humble pie for the modern mental health system. At best, the medical model is a partial answer to the questions that have troubled human kind the most. It basically says:

The reason you suffer is because your biology is bad. The reason bad things happen to you is because you are acting out your biological destiny. The cure for that is to take a pill. If that doesn't work, we have electroshock as a back up. We're also making tremendous gains in psychosurgery so you should see a comeback in better lobotomies any day now. We don't have an opinion on death or what happens after it - that's not scientific. But, we can give you a pill if you're anxious. At least, you will get a good night sleep, and it won't trouble you as much.

In short, they have not begun to scratch the surface of the questions that really matter. And a lot of us don't find the answers they do offer very satisfying. For that reason, some of us are beginning to take back our own lives. We are beginning to ask our own question and find our own answers.

If you'd like more rewarding answers than simply medicating away the most important questions of human existence, we invite you to join us.

The following survey was developed by people who have been diagnosed and labeled. Our lives weren't working and we wanted to know how we got here. We wanted to find more meaningful answers than the mental health system was offering. The following are some of the questions we asked ourselves and some of the answers we found:

Lived Experience Survey

A Survey To Assess the Impact of Real Life Issues on Mental/ Behavioral Health

[If you want to take this survey online go to:

https://goo.gl/forms/Wi2HX2tPcjYMXKj03]

This survey was developed to help you assess the impact of real life issues - like trauma, human needs, social relationships and community responses - on your personal well-being. No matter what difficulties you are having, there is a good chance that factors like these are affecting you in some way. Trauma, human needs and how those around us respond are closely related to both mental and behavioral health. Nobody feels or does well when their human needs are at risk, ignored or actually violated. Nobody feels or does well when those around them disregard, dismiss or actually blame them for the important concerns they are trying to raise.

That is the essence of the personal and social trauma that causes or worsens the mental and behavioral health challenges that so many of us in modern society are facing. All too often, however, the systems we turn to fail to connect the dots. If those who are supposed to help us fail to make these connections, we may not either. Even worse, we may abandon the truth of our experience and our own knowing.

In this survey, we try to change that. We ask about many different kinds of experiences that can profoundly affect our sense of well-being. We also ask about many different areas of well-being - including mental, physical, social, educational, vocational and spiritual.

We are very interested in your responses. We are trying to understand the connection between real life issues and human well-being. We are also trying to raise awareness at state, national and international levels about these issues. Your honest responses can help us do that.

However, you have no obligation to submit this survey. You can just use it for your own awareness, if that is what feels right to you.

If you do choose to submit this survey, we will not disclose any identifying information you write out unless you give us express permission (see question #14).

1. Human Needs That We All Have 

Here are some common human needs. These needs are so important that many nations around the world have concluded they are human 'rights'. With respect to your life, do all of these needs feel safe and secure? Have they always felt that way? (Check any that don't or didn't.)

Autonomy/ self-determination - others respect our choices even if they disagree

Beliefs/ opinions/ ideas - to have them and share them with others

Clean air, water, environment

Communication - interact meaningfully with others

Dignity and respect

Education - to learn and develop our potential

Employment - to meaningful work and a livable wage

Family - to form relationships and have them honored

Food - healthy, nutritious, affordable

Healthcare - competent, affordable, accessible

Housing - clean, safe, affordable, available, allows family, pets

Justice / fair treatment - by the community, law enforcement, court system

Leisure/ recreation - to have time for and access to enjoyable activites

Liberty/ freedom - make choices about our lives & how we live them

Life - be able to access the protection and resources we need to stay alive.

Movement - go where we want to go, travel, change where we live

Participation - in activities, community, culture, government,

Political views, expression and participation

Privacy - to control personal information & to be left alone

Property - to own, access, enjoy and dispose of personal possessions

Religion & Spirituality - have a belief system, practice it & share it with others

Safety - protection from violence, abuse, unwanted physical contact, & exposure

Other:

2. Discrimination/ Bias/ Prejudice

All too often other people make things worse instead of better. They may highlight our vulnerabilities or even intentionally prey on them. They may judge or exclude us to advance their interests or agendas. Below are some ways this can happen. Which ones have you experienced?

Abilities - physical, emotional, cognitive diversity

Age - too young/ too old

Beliefs - our views & experiences of reality

Behaviors - personal actions or mannerisms that others may not understand

Cognition - our way of seeing, understanding & making sense of things

Communication style - how we express ourselves or receive information from others

Criminal justice involvement -history, arrest, conviction, etc.

Education - how little (or much) we have of it

Family background

Gender identity (male, female, queer, other)

Homelessness/ housing status

Medical condition

Mental health history, diagnosis or label

Political views

National origin

Physical appearance, including weight

Poverty/ Income status

Race

Religious or spiritual views

Sexual orientation

Social class

Other:

3. Extent of social betrayal

The amount of harm we experience comes from more than just what happened. It also comes from how those around us respond (or fail to). Who actively participated? Who looked the other way? Who blamed instead of helped us? (check all that apply)

Government

Institution

Military

Jail or Prison

Law Enforcement

Hospital or Healthcare setting

School

Agency or Organization

Service Provider

Employer

Employee

Private citizen

Person in the community

Family member

Friend

Peer

Other:

4. What harms or losses resulted?

When human needs are disrespected, violated or insecure, all sorts of harms can result. These are not illnesses. They are injuries. We should not be 'treated' as if we are the 'problem.' We deserve support to repair the damage and recover what we have lost. Properly speaking this should involve community support, validation, restitution and reparations, not medical providers 'diagnosing' and 'treating' us as if we are 'ill'.

Behavioral distortions - impulses, urges, addiction, compulsions (e.g., to express pain &/ or cope with other harms or losses)

Chronic Pain - physical, emotional, existential

Cognition - ability to think, reason, concentrate, perceive, understand, reason, learn

Community - sense of belonging, respect, trust/ respect of neighbors

Cultural - opportunities and experiences available to others

Educational - access to learning & training to develop our potential

Emotional -feelings, mood, sense of security, enjoyment, life satisfaction

Existential - wellbeing, peace of mind, trust in the universe, relationship with self/ others/ life/ god

Family - discord, separation, lessened quality of relationships, death

Financial - new expenses, lost income/ savings

Material - housing, property, possessions, ability to make a living

Motivation - attitude, sense of purpose and direction, energy for living

Physical - major or minor injuries, health consequences

Relational - ability to trust, connect or communication with others

Societal - social status, position in society, meaningful voice & participation

Traumatic implantation - intrusive voices, visions, flashbacks, thoughts, memories

Violation of personhood - physical, emotional, mental, spiritual

Vocational- loss of skills, opportunities, reputation, income

Other:

5. Duration of Injury

When did this first start? How long has it been going on? As a general rule, our injuries are more severe the longer we have suffered without meaningful redress.

Your answer

6. What was this like for you?

Please tell us, in your own words, anything else you would like us to know about how your life was impacted.

Your answer

7.What traditional mental health services have you tried (or been forced to try)?

Please check all that apply

Outpatient therapy/ counseling

Case management

Medications/ medication management

Private mental health providers

Public mental health system (Medicaid)

Court-ordered (involuntary) services

Addictions / Behavioral Health Services

Inpatient Psychiatry Treatment (hospital)

Corrections / Criminal Justice System

Residential Treatment (long-term)

Electroconvulsive therapy (shock, ECT)

Transcranial magnetic stimulation (TMS)

Psychosurgery (lobotomy, etc)

None of the above

Other:

8. What Other Things Have You Tried?

Please check all that apply

Alternatives to Suicide Groups

Art, Creativity, Writing

Avoiding or reducing conventional mental health treatment

Body Work (massage, rolfing, cranial sacral, etc.)

Coming off or reducing psychiatric medications

Depression-Bi-Polar Support Alliance

Eastern Medicine (acupuncture, herbs, et al)

Exercise, Gym Memberships

Hearing Voices Network

Icarus Project

Intentional Peer Support

Meditation/ Mindfulness

Music

NAMI / Peer-to-Peer

Nutritional approaches

Online support groups (facebook, google plus)

Peer Respite

Peer Support- Drop in Center

Peer Support - Crisis Lines or Warm Lines

Spirituality

Support Animals

Twelve Step Groups

Wellness Recovery Action Planning

Writing - Journaling, Blogging, Poetry

Yoga, Xi Gong, Tai Chi, etc

None of the above

Other:

9. Learning From What Worked

What, if anything, did anyone (including you) do that was helpful? What seemed to make things better or stop them from getting worse?

Your answer

10. Constructive Criticism

What could/ should those responsible have done differently? What actions on their part could have prevented or lessened the harms to you?

Your answer

11. Big Picture Recommendations:

How does society need to change to prevent the harms that happened to you? How can we change the way things operate in order to bring out the best in people instead of the worst?

Your answer

12. Other Comments/ Suggestions:

Is there anything we missed or could do better? Anything else you would like to add?

Your answer

13. What U.S. State or Nation are you from?

(This helps with advocacy and social change)

Your answer

14. How do you feel about us sharing your information for advocacy and social change purposes?

Just include the boxes I checked

Don't share anything anyone could possibly associate with me

Contact me first - my contact info is below

Use it if you think it will be helpful

Other:

15. Contact Info (if you want us to try to reach you)

(Give preferred contact details here. E.g., name, phone, email, address, skype, facebook, google hangout, best days/ times)

Your answer

Where to send the survey:

c/o Sarah Knutson/ Peerly Human
147 N. Seminary ST, Apt 3
Barre, VT 05641

Tel. 802-279-3876
Email: skknut@gmail.com

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