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Topic: Building Your Community Of Support: Advocacy And Activism For ADHD

February 4th 2014 Meeting Notes for the Vancouver Adult ADD Support Group

Return to Vancouver Adult ADD Support Group Previous Notes Page

 

Building Your Community Of Support: Advocacy And Activism For ADHD. Covers: examples of other groups, strategies, self awareness and education, allies, foes, invisible minority, coming out of the ADHD closet or stay in, group advocacy and activism

Speaker: Paul Dayson

Thanks for Christopher Stanbury for taking notes.

Warm up question: What are the Advantages and Disadvantages of having ADHD as an activist?

 

1. Advantages, Can Go Either Way, And Disadvantages of Having ADHD As An Activist

 

Advantages Either way Disadvantages
     
Hyperfocus Boredom Time management
Energy
No filter
Distracted
Passion
Impulsive
Zealous
Creative
Not experts
Difficulty debating
Love to talk
Oppositional Defiant Disorder
Lack of follow through
Not a follower
   
OK in mayhem
   
OK in conflict
   
Flexibility / Adaptable
 

 

 

 

2. What are Examples of Advocacy and Activist Struggles?

 

Visible/Non-Minority Could Be Invisible Invisible Groups
     
Environmental (global warming)
Disability
LGBT (Lesbian Gay Bisexual Transsexual)
Occupy
Complex
ADHD
Civil rights / race
Tobacco
Mental Health issues
Animal rights
Agriculture/ Food / GMO
Homeless
Invisible Minorities
Local
Sex
 
 
Bullying
 


The experience is Different for Invisible Minorities

Target for jokes

No understanding

You're weird

Professionals often not trained

Strategies

Every advocacy and activist movement/group has developed strategies and tactics.

There are things you can borrow from the strategies developed by each of the groups above.

You do not have to reinvent the wheel.

 

3. Marginalization/The Power of Invisibility

 

If you feel alone - why - why do you not feel part of the group?

What is normal? Do you know anyone who is normal? Everybody has got something.

'Us' and 'them' does not make any sense. It is the creation of otherness to create power and powerlessness.

 

4. Being an Invisible Minority.

 

Perks Costs
Passing: Nobody needs to know. This means choosing your opportunities. Passing mean hearing discrimination against you such as jokes
You can appear 'normal' - when you want to. People need to understand
(If you are black you do not have that choice) What is a trigger?
  When you internalize you are beating yourself up.
  We need to say 'stop' and make people aware.
  Keep in mind that when, where and why is within your power.

 

 

5. Self-awareness & Education

 

Self-awareness Discrimination Education
     
To educate others
Where can you get an advantage by disclosing? Critical mass
Comfortable with self   Tactical
What is / is not due to ADHD   Net contribution
ADHD exists   When you accept an ADHD joke you promote discrimination
Scientifically illiterate   Socially acceptable
Can be grey area at times so learn how to define & explain ADHD   Less grief in life
ADHD thought of as only affecting elementary school boys   Less grief for others
Disclosure defines you   'Normalized'
    Acceptance
    Exposing the elephant
    Better quality of life
    Needs respected

 

6. What Is An Ally? Institutionally And Individually, Who Are Likely Allies?

 

Formed into small groups to discuss before coming together as large group.

Institutional Either way Individuals
     
High Achievers Celebrities Family
Medical community Authors / experts Doctors - 90% of Adults with ADHD are undiagnosed
Libraries / librarians Media spokespeople Very close friends
Supporting parents who have children with ADHD gives parents confidence to support child Myths People with other mental health conditions or those who have with family with them and are not judgmental

Suicides. Higher rates of suicide in teens and adults with ADHD

Media generally hostile - if presenter has gone public with having ADHD, then can be positive 'Pete'
ADHD Movies 'ADD and loving it'.   Websites and Blogs
Disability offices at colleges and universities   Parents of ADHD children
Local Community Centers   People who are empathetic - they know you and still support you
Parent teacher Groups   ADHD Service Providers. For example, ADHD coaches, doctors who know ADHD, therapists, psychiatrists & psychologists who know ADHD



'People with ADD hang out with other ADDers - We are easily bored by boring people.'

Foes

Media - especially the web

Celebrities (who are out of favour)

ADDers in denial/minimization of their ADHD and are projecting their internal shame on ADHD and ADHD medications in the hopes that no one will notice they seem to have ADHD. Often the worst stigmatizers.

Scientologists, and Scientology front groups i.e., CCHR Citizens Commission on Human Rights, Narcanon, Applied Scholastics, and many others, etc.

Employees / employers

Health industry (Pharma board)

Medical community

Competing advocacy groups who view world in zero sum terms $, media attention, govt resources etc.

Govt. / politicians

Natural Health supporters (many activists) Many demonize meds & big pharma because they view them as competitors to big supplements that they make money off. Some try to demonize their competition so people will look less closely at the evidence or lack thereof of what they are making money off of.

Govt. decision makers re which meds supported

Pharmacare

Allies


Celebrities who have gone public with ADHD

Friends

Family

ADHD drug companies

ADHD service providers, ADHD coaches, ADHD therapists, ADHD doctors/psychiatrists/psychologists

Others with other mental health conditions who understand ADHD

 

7. Coming Out Of The ADHD Closet. Who - Where - When - Why

 

You can pass as 'normal', but it gets tougher.

It is a process, not an event. When you "come out', that is not the end of the matter. For example you come out at the office but then change jobs and you are back a square one.

It is about achieving critical mass.

 

Who do you need to tell?

Family

Who do you want to tell?

Family

Friends

People I can help. 'I got through it. I want to help others'.

 

8. Who, Why, Costs, Benefits

 

Who

Family

Friends

Similar

Employer

Why

Understanding

Support

Help / not alone

Keep job

Costs

Out on a limb

'Your problem'

Acceptance?

Could lose friend

Lose job

Taxing

Social work

Way too high

Benefits

Work better

Same page

Practice

Know if real friend

Leveraging > CM

Not re-inventing the wheel

Sharing

Put to work where you excel

 

9. Group Advocacy and Activism: Realize you are not alone

 

Individual steps create group steps.

8-10% of Kids and 5% of adults have ADHD. They, like you, are invisible. It's also important to remember it's not a monolithic group but crosses gender, race, class, etc.

Everybody knows somebody with ADHD. That means parents, spouses, grandparents, friends, etc.

It means it is not just your issue - it is everybody's issue. It is larger than just you.

Need to achieve critical mass of awareness. There is power in numbers.

 

10. Open Discussion. Who, Why, Cost, Benefit

 

Family: understanding, acceptance, on the same page

Friends: support, could lose friend. Know who is your real friend

Employer: Help, keep job, Lose job, Work where you excel

Insurance Company: Keep Insurance Way to high

Similar people: Help / not alone. Sharing

Out on a limb: work better

'Your problem' Practice

Taxing Leveraging CM

Social work: Do not re-invent the wheel

 

 

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