Advocacy And Activism For ADHD

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Topic: 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. See the other Adult ADHD Issues.

Speaker: Paul Dayson

Thanks for Christopher Stanbury for taking notes.

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

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


Either Way




Time Management


No Filter






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?


Could Be Invisible

Invisible Groups

Environmental (global warming)


LGBT (Lesbian Gay Bisexual Transsexual)




Civil rights / Race


Mental Health Issues

Animal rights
Agriculture/ Food / GMO


Invisible Minorities




The experience is Different for Invisible Minorities

Target for jokes

No understanding

You’re weird

Professionals often not trained


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.



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. (If you are different colour than the majority of the population you do not have that choice)

People need to understand

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




To educate others

Where can you get an advantage by disclosing?

Critical mass

Comfortable with self


What is / is not due to ADHD

Net contribution

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



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.


Either way


High Achievers



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


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 often ignorant or hostile or both – if presenter has gone public with having ADHD, then can be positive

Websites and Blogs on ADHD

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 Support Groups

‘People with ADD hang out with other ADDers – We are easily bored by boring people.’


Some in the 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.

Some Employees / employers

Medical community (that deny/minimize/stigmatize ADHD)

Some Govt. / politicians

Some 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.

Some Govt. decision makers re which meds supported

Pharmacare for not covering enough ADHD medications


Celebrities who have gone public with ADHD



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?


Who do you want to tell?



People I can help. ‘I got through it. I want to help others’.

8. Who, Why, Costs, Benefits









Help / not alone

Keep job



Could lose friend

Get harassed and stigmatized at work by family/friends/doctor etc

Lose job

Out on a limb

Social work


Way too high

‘Your problem’


Know if real friend

Leveraging > CM

Not re-inventing the wheel


Put to work where you excel

Same page


Work better

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

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.

Individual steps create group steps.

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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