DISABILITY MATTERS"

WITH JOYCE BENDER

GUEST:  MS. ALISON HILLMAN,

DIRECTOR OF AMERICAS ADVOCACY INITIATIVE

MENTAL DISABILITY RIGHTS INTERNATIONAL

TUESDAY, APRIL 27, 2004

2:00-3:00 P.M. EASTERN

 

 

 

Captioning Provided By:

CAPTION FIRST, INC.

1-800-825-5234 (Voice/TTY)

 

 

 

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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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>> Welcome to "Disability Matters" with your host, Joyce Bender.

All comments used and opinions expressed on this show are solely those of the hosts, guests and callers.

The host of "Disability Matters," here's Joyce Bender.

>> JOYCE BENDER:  The question is:  Can one individual change the attitude?

How about can one individual change the attitude of a country?

And I say:  Yes, they can.

That just goes to show you why one person can make a tremendous difference, and we are so excited, I'm so excited, to have Alison Hillman, the Director of Americas Advocacy Initiative for Mental Disability Rights International as our guest today, because Alison, I got to have dinner with her.

Not very long ago at the American Association for People with Disabilities Gala in Washington, D.C., and the reason I'm congratulating her, she was the recipient of the prestigious Paul G. Hearne Award.

First, welcome to the show.

>> ALISON HILLMAN:  Thank you so much, Joyce.

>> JOYCE BENDER:  That is such a prestigious honor, for all of our listeners just so you know, to receive the Paul G. Hearne Award is truly a prestigious honor and Alison was one of the recipients of the award that evening and went up and received the award and spoke for a few minutes and showed a video.

We'll be talking about all of this later on.

But can you share with our listeners, what did that mean to you that evening, receiving that award?

>>ALISON HILLMAN: Well, it was really an overwhelming honor.

Not only to be there with so many recognized and formidable leaders of the disability community, it included advocates which have fought for so long for the advances in disability rights but receiving the award I just feel it also has given me a tremendous responsibility to continue the struggle to advance the rights of people with disabilities, and also to work on a cross‑disability movement here in the United States to make sure that the full inclusion in society of people with disabilities.

>> JOYCE BENDER:  I’m glad to hear you say that, because, Alison,  you are someone I believe, can really help us tremendously.

Throughout the world, but definitely right here in the United States.

I just feel that you are someone that is going to continue to make a difference.

And I know you will use the award in that way.

>> ALISON HILLMAN:  Well, I certainly hope to.

>> JOYCE BENDER:  I know you will.

Alison, you are an attorney with an international human rights background.

And I must say, you have an extremely impressive academic background from Cornell University, and from American University's Washington College of Law.

I know at Cornell and onward you had a very, very impressive background from an academic standpoint.

So tell us first, what made you decide when you went to college, why did you want to be an attorney?

Did you always want to do that from when you were a child?

>> ALISON HILLMAN:  I didn't always want to be an attorney and I actually didn't think seriously about studying law until I was working with the United Nations mission in Guatemala and I was documenting human rights abuses there.

In the mid 1990s and after living and working in the country nearly three years and not really seeing an end to any of the abuses and witnessing kind of the impunity enjoyed by perpetrators, I really felt powerless to change the situation.

And so at that point, I decided that if I wanted to make a real difference in international human rights law, that I needed the tools to be able to hold violators of human rights abuses accountable.

And I thought that the most effective way to do this would be to become an attorney.

So I decided at that point that I needed to return to the States and go to law school.

>> JOYCE BENDER:  And you know what?

For all of the people listening to this show today, here is why she is a Paul G. Hearne Award winner.

Talk about initiative.

This is what we need more of, people like you, Alison, people who are true leaders.

You saw a problem, instead of just saying, I see a problem, you said:  Now, what can I do to do something about that?

And I hope all of you, especially young people with disabilities who are listening, that, that's the way it is.

If we want to make a difference for people with disabilities, we have to have initiative and do something about it, not just talk about it.

As I said, that's why you are a Paul G. Hearne Award winner.

And I know you are a great leader for people with psychiatric disabilities.

Could you share with our listeners, Alison, why and how you yourself got involved in this area?

>> ALISON HILLMAN:  Sure.

How I became involved in the work is maybe a little bit easier to answer than why.

I was in my final year of law school, and I was working for a student‑run publication called "The Human Rights Brief."

And an article was submitted by an organization called Mental Disability Rights International.

I did a little research and found that MDRI was using international human rights law to enforce the rights of people with mental disabilities in Eastern Europe and Latin America.

So I called the Executive Director, Eric Rosenthal, and proposed we apply for a New Voices Fellowship which would pay my salary for two years.

New Voices is a leadership development program that supports small nonprofit organizations who commit to cultivating and strengthening, excuse me, the leadership potential of historically underrepresented groups.

And I wanted to work in mental disability rights, because I was diagnosed with bipolar disorder and hospitalized when I was in my 20s and experienced firsthand the stigma and discrimination that accompany a mental illness diagnosis.

Not to mention the tremendous self‑doubt and fear that flow from such a diagnosis.

So I thought that working with MDRI utilizing international human rights standards to improve the lives of fellow persons with mental disabilities in Latin America would be a perfect way to incorporate both my personal history but also my passions in human rights, and in Latin America, for fighting for one of the world's most oppressed groups.

>> JOYCE BENDER:  And that's the truth.

>> ALISON HILLMAN:  Yeah, that's ‑‑

>> JOYCE BENDER:  That is the truth.

And I'm sure that you yourself know that people with psychiatric disabilities are dealing with severe attitudinal barriers when it comes to employment issues.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  And I don't know where, you know ‑‑ for example, I have epilepsy, and we know there are stigmas attached for people with epilepsy, also.

>> ALISON HILLMAN:  Sure.

>> JOYCE BENDER:  But I must say that the employment scenario is very difficult for people with psychiatric disabilities.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  When you were diagnosed with this, Alison, what do you feel was your greatest support system that helped you?

>> ALISON HILLMAN:  I think the greatest support for me was a significant relationship that I had at that time in my life, and it was really about a year after I was diagnosed and had left the hospital for the last time, I was still living with my parents, I was still at home, I still hadn't really incorporated into society.

And there was a young man who, you know, asked me out, and I just, you know, he really helped me to reintegrate into society, and leave my fears of kind of being pointed at as, oh, there goes, you know, that person with a mental illness.

Because I really ‑‑ there was so much self‑fear and doubt around reintegrating into society.

And you know his support was probably one of the most helpful things for me.

>> JOYCE BENDER:  It is amazing how you can meet one person who can change your life, isn't that amazing?

>> ALISON HILLMAN:  Yes, yeah, it really is.

>> JOYCE BENDER:  Do you have advice for young people today who are dealing with psychiatric disabilities, and who are dealing with stigma, not only from their friends, but even from their family?

>> ALISON HILLMAN:  I think that you really need to find people who love and support you unconditionally.

And I think one thing that really helps people with mental illness diagnoses is to find peer support organizations, people who have been through similar experiences, and can provide, you know, a perspective of their personal tragedy:  When they were diagnosed, and what's happened.

I found that that can be very helpful.

Not just in the United States, but also abroad.

>> JOYCE BENDER:  Well, I agree with you, because it's the same thing with epilepsy.

I recommend to everyone, you know, the thing that will help you the most is to talk to someone else in a support group, because then you realize you're not alone.

>> ALISON HILLMAN:  Right.

>> JOYCE BENDER:  And you realize that other people are dealing with very similar situations.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  And your experience when you were in the hospital, how did you feel you were treated?

>> ALISON HILLMAN:  I felt like everything I said was questioned.

It was a very controlled environment, a very hierarchical top‑down, these are the rules and you must follow them.

If you act according to the hospital in an inappropriate way, then you're not allowed to, you know, go out, you know, at lunchtime.

So it was a very controlled environment, very authoritarian environment and it didn't at least for me, it really didn't instill in me confidence or the notion that I could become a functioning individual again.

>> JOYCE BENDER:  Yes.

And unfortunately, we have on our radio show, when we've had people send in e‑mails or call in, we've heard this, you know, very often, and that is an unfortunate situation.

Well, Alison, you lived and worked in Latin America, which is so exciting, on and off for 11 years.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  Now, what made you decide to go there?

Was this from the studies that you were doing?

>> ALISON HILLMAN:  Yeah, it was, actually.

It kind of sort of, when I was back in high school, a good friend who was a couple of years older and studying at Cornell would come to dinner at my parents' house and would discuss what he was learning in his Latin America history courses, about the role of the U.S. government, either role they'd played in overthrowing democratically elected governments and funding oppressive military regimes and this information really made me indignant, and I decided that I wanted to do a concentration in U.S./Latin American relations in college.

So during college, this is when I started visiting Latin America.

I spent a summer in Mexico, volunteering for the American Friends service committee.

And we were helping build a basketball court, and teaching art classes there.

After graduating from Cornell, I wanted firsthand experience, and to learn for myself what the impacts of U.S. policies in Latin America were.

And I wanted to be in some kind of long‑term service project there.

But I really needed to improve my Spanish, so I traveled to the Dominican Republic for a couple of months and lived with a good friend from college, studied Spanish and taught English there.

And through there, went to Guatemala.

>> JOYCE BENDER:  Hold on, because we want to hear everywhere you've been in Latin America.

We'll go to a break.

We'll be right back with Alison Hillman, the Director of Americas Advocacy Initiative for the Mental Disability Rights International.

We'll be back.

[ music playing ]

 

>> Welcome back to "Disability Matters" with Joyce Bender.

If you have a question or comment for Joyce or her guest, please call toll free at 1‑888‑335‑5234.

>> JOYCE BENDER:  If you have a son or daughter and are trying to teach them initiative and how to be a leader, you better be listening to this show, because Alison Hillman is surely a great example of what I'm talking about.

And Alison, you were talking about, while you lived in Latin America, you ‑‑ the different countries that you were in.

Could you repeat those again for a few minutes?

>> ALISON HILLMAN:  Sure.

I think I'd started out in Mexico.

I had lived there for a summer, doing a service project.

Then I lived in the Dominican Republic for a few months, working with teaching English and studying Spanish.

And then I went to Guatemala to work with an organization called Witness for Peace and I was accompanying returned refugee populations who were displaced by a period of intense violence in the '80s, and documenting the effects of structural adjustment policies there.

And during law school, was able to visit a few Latin American countries, returned to Guatemala to research the effects of petroleum exploitation on the environment and indigenous rights in the mine bias field reserve which is an area in the north of Guatemala where the ruins of Tecal are.

And I was also a student attorney in the international human rights law clinic at American University, and through that, I was able to travel to Panama, and visit an indigenous community with a land claim case before the Inter‑American Commission on Human Rights and also traveled to Chile and conducted research and met with clients in some cases we were filing in federal district court as part of human rights impact litigation project.

>> JOYCE BENDER:  That is so exciting.

Talk about getting to learn about other cultures and seeing the rest of the world.

Then you had to move back to the United States to the cold climate.

>> ALISON HILLMAN:  Yes, right.

>> JOYCE BENDER:  I'm sure you had a hard time adjusting to that after living in Latin America.

>> ALISON HILLMAN:  It was quite an adjustment and one that did not come easily.

>> JOYCE BENDER:  You know what?

People can call in, but they can also e‑mail questions to us prior to the show, because we always, as my listeners know, send out press releases to the various newspapers and different mediums about who our guest will be.

And I always appreciate the questions that are sent in but I can never read all of them.

So I try to choose a few.

But one question for you, Alison, is that, "I know, Ms. Hillman, that you work with people with psychiatric disabilities or have worked in that area.

"My child has a psychiatric disability, but I do not feel comfortable telling other people, because of how he will be treated.

"What advice do you have for me?"

>> ALISON HILLMAN:  That is difficult.

If this ‑‑ you said it was a mother, is that right?

>> JOYCE BENDER:  Yes, Linda.

>> ALISON HILLMAN:  Yeah, Linda, if you know of other family members of children with mental illness, then I would recommend that you get in touch with them and speak with them.

It's definitely not easy, and there are so many ‑‑ there is so much stigma and discrimination that goes on that sharing something like that openly with individuals can have negative effects, unfortunately.

But I think that talking about your concerns with people who have been through similar experiences, other family members, can be very helpful.

So that's, I guess, where I would start.

And also, you know, you might want to talk about it with your child and see what your child thinks about sharing that information with other people.

And it might actually be the child's decision whether to share that openly with individuals or not, because it is a very ‑‑ it's a very touchy subject.

>> JOYCE BENDER:  Well, here's a very closely related question.

Then we'll move on here for a few minutes.

This is from Ted, who is in college, and lives in Kansas, and says, "Alison, I have a psychiatric disability but I know that if I tell this to my friends and girlfriend, they will leave me.

How did you get the courage to talk about this?"

>> ALISON HILLMAN:  I think that if they're true friends, they won't leave you.

I got the courage to talk about it ‑‑ you know, it depends.

Some people I share this with, and other people in other aspects of my life, don't necessarily know that I have a psychiatric disability.

But I think, Ted, if they are true friends, they'll stick by you and they'll support you.

And you know, that would be my response.

I guess I initially, the first person that I can remember telling who wasn't in my close circle of friends was someone who I had talked about earlier in the show who I had just started dating, and he was a ‑‑ studying to be a medical doctor, and I thought, well, if I can share this with him, you know, he's going to be in the medical profession, he should understand, you know.

And I remember him asking me, on our second date, you know, so what is this medication that you have to take?

And I told him, you know, that I was diagnosed with bipolar disorder.

And he said, wow, you're one of the most stable people I've ever met.

I said, well that's what Depakote will do for you.

But honestly, Ted, if these are true friends, they will stick by you and support you.

So good luck.

>> JOYCE BENDER:  You know what?

Alison, the one message you just gave is the truth.

I have heard this so many times, even from people when they say, if I tell my friends I have epilepsy, or if I tell my friends I have a psychiatric disability, you know, they'll leave me.

And I say the same thing you do:  Then they're not friends.

>> ALISON HILLMAN:  Mm‑hmm, exactly.

>> JOYCE BENDER:  Always remember that.

Anyone listening to this show:  A true friend will accept you as you are, and having a disability is just part of you, period.

I am not ashamed that I have epilepsy.

That's just a part of me.

And that's the way it is, just as there are different cultures of people, there is a disability culture.

And that is just something that you, you know, accept and you should not feel like that, so they're not true friends.

I agree with Alison, that it's just so infuriating to me, because I heard a young girl speak at the Kids Speak Up/Speak Out Conference for the epilepsy foundation in Washington, D.C., 11 years old, who said that when she told her friends, or when they found out she had a seizure because she just started having these when she was 11, that they all dumped her.

And I said, well, those were not friends.

>> ALISON HILLMAN:  Right.

>> JOYCE BENDER:  Those were losers.

>> ALISON HILLMAN:  Right.

>> JOYCE BENDER:  Not friends.

Anyway, so Alison ‑‑ and by the way, thank you for the questions.

You know, as I said, I can't read all of them, but I always appreciate all the e‑mail that we receive.

Anyway, Alison, you are a person who filed the first petition with the Inter‑American Commission on Human Rights challenging abuses in a psychiatric institution.

To me, that was a tremendous accomplishment.

But I'd like you to share with our listeners a little bit about that story so they can understand what life was like for those people.

>> ALISON HILLMAN:  Sure.

Well, we here at MDRI received some information that there were some fairly egregious abuses going on in Paraguay, and we received specific information that there were two boys, two adolescents, who had been detained in small cells naked without access to bathrooms for many years.

And so we took this information and did a couple of investigation missions, and documented the conditions, which were truly horrific.

These two individuals that I spoke of were detained in 6x6 feet isolation cells, and they didn't, you know, the reports that we had heard were correct, they didn't have access to bathrooms.

They were covered in their own feces, they had to eat from these cells, they basically spent all day and night in these cells, except for a couple of hours in the morning and a couple of hours in the afternoon every other day.

They would take turns having time outside, and the conditions in the outside area were equally horrible.

It was filled with garbage and broken glass.

So we decided to take a case to the Inter‑American Commission on Human Rights to file what's called a precautionary measures petition, which would ask for emergency measures to be taken to protect the lives and the physical, mental, and moral integrity not only of these two boys, but of the other 458 people that were detained in the institution.

The conditions really for everyone were horrific.

People were locked in either cells or in larger patio‑style wards.

There weren't enough beds for the number of patients they had.

There was overcrowding.

There was feces and urine in many of the patios, and it was very unhealthy.

There were cases of tuberculosis and individuals being detained side by side in overcrowded conditions with patients with tuberculosis so it was really a virtual wasteland, and there were, these really subhuman conditions and no possibility of rehabilitation.

There were no community services for people with mental illness.

>> JOYCE BENDER:  Wow!

Is that shocking?

That is hard to believe that could go on in our lifetime.

Thank God for Alison.

We'll talk about the results as soon as we come back.

We're with Alison Hillman, Paul G. Hearne Award winner, and great leader for people with disabilities.

We'll be back.

[ music playing ]

>> If you have a question or comment, please call toll free at 1‑888‑335‑5204.

Please welcome back the host of "Disability Matters," here's Joyce Bender.

>> JOYCE BENDER:  We are back talking to Alison Hillman, the Director of Americas Advocacy Initiative for the Mental Disability Rights International, and most recently, Paul G. Hearne Award winner.

And you know, during the break, let me tell you what I was talking to Alison about.

We're going to talk next about this video that she was involved with that was made during her visit to Paraguay to this institution that she was just talking about, where they were abusing people with psychiatric disabilities.

And what I was asking her was, how the heck did you get in there?

Because if you were at the AAPD gala, and someday I hope this is, like, shown at the Oscars for a documentary, and anyone that listens to this show, write to whomever you know in the media and tell them you heard about this video and this documentary and you'd like to know more about it.

Let me first have Alison talk about it for a minute.

Alison, you worked with WITNESS, is that the name of the organization?

>> ALISON HILLMAN:  Yes.

>> JOYCE BENDER:  To produce the video that documented conditions in the psychiatric hospital that we just were talking about in Paraguay.

That was last October, that's what you were telling me.

>> ALISON HILLMAN:  Yes, mm‑hmm.

>> JOYCE BENDER:  You were telling me, you did go to the Minister of Health and what did you tell him?

>> ALISON HILLMAN:  We went to visit the Minister of Health before to ask permission to gain access to the institution.

And we met with him for perhaps 10 minutes, and he called up the institution's Director, and told him that an international delegation was coming to investigate the hospital, and so we met with the Director of the hospital before taking a tour of the institution.

And as I was telling you, you know, he allowed us in.

He said, you know, the video is fine, cameras are fine, you're free to look at records, so we really had unlimited access to document and to review records.

Which is not something that we get in, you know, every country that we investigate abuses in.

>> JOYCE BENDER:  And not only that, especially when it was so terrible.

>> ALISON HILLMAN:  Yes.

>> JOYCE BENDER:  Absolutely deplorable.

>> ALISON HILLMAN:  Yes.

>> JOYCE BENDER:  What I was telling Alison is I still can't get over how they allowed her to do this.

And what is very frightening is that as we were talking, they may not have thought they were doing anything wrong.

>> ALISON HILLMAN:  Yeah, they said that there were budgetary constraints, that they didn't have the personnel, that they didn't have the budget to clean the institution, that they didn't ‑‑ that, you know, they thought that this was the only treatment for, for instance, for these two boys, either that or that they just didn't have the resources to be able to provide better treatment.

So they had lots of reasons why they ‑‑ why conditions were the way they were.

>> JOYCE BENDER:  And this video, or clip of this video, was shown at the AAPD Gala.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  And I will tell all of you listeners, I mean, it was so powerful.

It shows these individuals, as she mentioned, here's a young man naked, living in total dirt and squalor, just filth.

And this is supposed to be a psychiatric institution.

This is supposed to be a hospital.

>> ALISON HILLMAN:  Mm‑hmm, right.

>> JOYCE BENDER:  And this is how he was living.

And you could have heard a pin drop in the room.

And I was telling Alison that afterwards, everyone at my table couldn't believe that they allowed her in there to, you know, do this video, which is even worse, thinking that it's because they didn't think they were doing anything wrong.

But can you share with our listeners what was the result of that video?

And also, what was the result with the government?

What did they do about this?

>> ALISON HILLMAN:  Sure.

The video was used initially to accompany a written petition, to visually document the abuses that we found in the hospital.

But it was also used to gain the interest of CNN Espanol in doing a story on conditions in the hospital so I think that the results that the video had were two‑fold.

First it provided vivid evidence of conditions in which people were detained and it possibly influenced the Inter‑American Commission to grant emergency measures to protect people within the institution.

And secondly, it also helped leverage this investigative report done by CNN Espanol and the report was broadcast on December 26th and 27th of last year, and on the morning of December 31st, the President of Paraguay made a surprise visit to the institution with the Minister of Health and was absolutely appalled by the conditions and he fired the institution's Director and appointed an investigative committee to examine mismanagement within the hospital.

And the President has since appointed a new Director of the hospital, and the government of Paraguay has asked for technical support from the Pan American Health Organization to transform mental health services in the country from institution‑based care to community‑integrated services and supports.

So there have been, you know ‑‑ the video and the petition really had some pretty tremendous impacts, certainly far beyond what I would have anticipated.

>> JOYCE BENDER:  And you know what?

There is my example of what I was talking about with you before.

Here is a person who saw this problem, went to law school, saw another problem in Latin America, went to Latin America, got involved with this, and it impacted the attitude of the President of Paraguay.

That is a tremendous story, Alison.

>> ALISON HILLMAN:  Well, I had some other support.

>> JOYCE BENDER:  I have just total respect for you, for what you did.

I think that is tremendous.

Now, talking to you at the table about, you know, your visits in Latin America, it seems as if across the board, that people with psychiatric disabilities, you know, are treated in an inferior way or in an oppressive fashion.

Why do you think that is?

>> ALISON HILLMAN:  Well, I think it's not just a problem within Latin America.

Really, everywhere that MDRI has done investigations into conditions in mental health systems, we've documented conditions now in 21 countries, in Eastern Europe and Latin America.

We've found very similar conditions wherever we've gone.

And I think that, you know, even within the United States, persons with mental disabilities are kind of the bottom of the totem pole in terms of people organizing around the rights of persons with mental disabilities.

So I think it's really very similar conditions anywhere, and it's just, particularly people with psychiatric disabilities, are misunderstood, but people with intellectual disabilities also don't have the political clout that other sectors of disability movements have.

>> JOYCE BENDER:  Mm‑hmm.

>> ALISON HILLMAN:  So I think that when people are told that they can't speak for themselves, because they have a, you know, a diagnosis which says that they're irrational or intellectually inferior, then it's very difficult for those same people to organize.

>> JOYCE BENDER:  Yes.

And it all goes back to ignorance and fear and lack of understanding, it really does.

You know why I think it's worse in other countries?

It's for the same reason, why is it worse in other countries for people, you know, with epilepsy or with other disabilities?

It's just, really, no understanding, you know, as you mentioned.

We have problems right here in the United States, so it's just in other countries that are further behind that do not have the great civil rights that we had with the Americans with Disabilities Act, or the great leaders we've had in this country in those areas.

You know they are just behind.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  And I think I asked you at the table that night, what about people with epilepsy?

Have you noticed how they were treated in some of those same countries?

>> ALISON HILLMAN:  Yeah.

MDRI has found many people with epilepsy who are Institutionalized in psychiatric facilities.

Again as you said, there's lack of understanding of what epilepsy's about and what can be done for epilepsy.

During my last visit to Paraguay, I interviewed a woman in the psychiatric institution who had epilepsy, and she had been detained there for 10 years, and there were no plans for her discharge and no services in the community that could help her.

So persons with epilepsy also are just suffering tremendous stigma, and discrimination, and lack of understanding.

>> JOYCE BENDER:  Yes, because there are some countries that still believe in, you know, that this is a sign of demon possession, that the, you know, things of that nature.

Although, I'm sorry to tell you, there are still people who think that in the United States.

But that is why it's so important for us to reach out and help people throughout the world, because no matter where you are, a disability's a disability, no matter where you live.

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  And with that, we'll be right back to talk more to Alison Hillman from MDRI and this year's Paul G. Hearne Award winner, one of three.

We'll be back.

[ music playing ]

>> Welcome back to "Disability Matters" with Joyce Bender.

If you have a question or comment for Joyce or her guest, please call toll free at 1‑888‑335‑5204.

Now back to "Disability Matters," here's Joyce Bender.

>> JOYCE BENDER:  I don't think there's any doubt in your mind as to why Alison Hillman is a Paul G. Hearne Award winner if you've been listening to this show.

You are truly, Alison, a great example for all young people with disabilities.

It is just so amazing what you have been able to accomplish just through your own desire and passion.

Again, I just compliment you for all these things you've done.

And I know, Alison, that you also were a co‑author of "Unanswered Cries: Institutionalization and Violence Against Children with Mental Disabilities".

I wanted to ask you about that.

What prompted you to write this?

And was this also a situation you dealt with in Latin America?

>> ALISON HILLMAN:  Yeah.

Many children that I've seen with mental disabilities are abandoned in orphanages or large state‑run institutions, where they don't receive the love and support and nurturing that every child needs to grow and thrive.

And I've witnessed children locked in tiny rooms, or in cells, as I just described, in Paraguay, and, you know, because they're either considered uncontrollable, or because staff fear abuse from other residents.

And so through this article, I wanted to emphasize that long‑term Institutionalization is severely damaging to children and that we need to push for community‑integrated services and supports for children with disabilities and their families.

The article references some international disability rights material, one of which is declaration of Caracas which recognizes Institutionalization as a sole response to mental illness actually hinders the achievement of effective mental healthcare and the article also references the convention on the rights of the child which emphasizes the need for children with disabilities to be in the community and to have families and supports in the community.

>> JOYCE BENDER:  And has this article been used throughout different countries in Latin America?

>> ALISON HILLMAN:  Well, I know that the article has been translated into French, Arabic, and Spanish, I think.

So I'm not sure, I think that it's available on the website.

It's the One in Ten Publication from Rehabilitation International.

>> JOYCE BENDER:  Before we forget that, what is your website, Alison.

>> ALISON HILLMAN:  Our website for Mental Disability Rights International is www.MDRI.org.

>> JOYCE BENDER:  So that's MDRI.org.

>> ALISON HILLMAN:  That's correct.

>> JOYCE BENDER:  So if anyone wants to reach you, is that how they could reach you?

>> ALISON HILLMAN:  Yeah, they could go to that website.

There should be a link there to my e‑mail address, which people could also e‑mail me at ahillman@MDRI.org.

>> JOYCE BENDER:  Well, you are, as I have cited several times, an example of how one person can make a tremendous difference in the lives of millions of people.

I have to ask you:  Who do you attribute this to, this successful initiative in you?

I mean, who was your role model?

>> ALISON HILLMAN:  I guess I'd have to say my father.

He's a large animal veterinarian, and he's really done tremendous things for veterinary medicine.

He now works actually with acupuncture and performing acupuncture on animals and he's been a wonderful teacher of veterinary medicine, and speaker on veterinary medicine, and he's also been very, very supportive of me.

So that's who I'd have to say is my ‑‑ has been my role model for a long time, and most recently, I'd have to say Lori Ahern is one of my biggest role models.

She's actually my mentor for the Paul G. Hearne Award.

She's been very involved in the recovery movement here in the United States for the last 11 years and she's now Associate Director here at MDRI.

>> JOYCE BENDER:  And tell me, what would you say you learned from her?

What was the most important thing you learned from her, that helped you in your career?

>> ALISON HILLMAN:  Yeah.

Well, she's just a very strong woman who has been open about the fact that she has a psychiatric diagnosis, and that she's a trauma survivor, and she's been a very powerful organizer around rights of people for psychiatric ‑‑ with psychiatric disabilities.

So that has been just a tremendous inspiration to me, to see how she has worked so hard for a recovery model for mental illness, and really helping other people with psychiatric disabilities discover that there is, you know, life after a psychiatric illness diagnosis.

>> JOYCE BENDER:  That's right.

And you know what?

That is a tremendous impact right there alone, because I know that until I met Tony Coelho, I would always say I had a seizure disorder, until I met him.

And heard him talk about his experiences with epilepsy, and he had that type of impact on me, and I just think so highly of Tony and he's been a great mentor for me.

But there's no doubt about it, just when you meet someone with a disability like your own, who is open and lives with it and is doing something positive ‑‑

>> ALISON HILLMAN:  Mm‑hmm.

>> JOYCE BENDER:  ‑‑ it has a tremendous impact on you.

>> ALISON HILLMAN:  Absolutely.

>> JOYCE BENDER:  So, Alison, what advice do you have for Americans who have psychiatric disabilities that are not only facing stigma, but also facing the lack of employment opportunities right here in the United States today?

What advice do you have for them?

>> ALISON HILLMAN:  The thing that really helped me when I was first leaving ‑‑ when I first left the hospital and was struggling to be reintegrated into society and feel comfortable in the community, was really to find people who loved me and supported me.

And I think that this is really essential for people who have gone through very difficult experiences as being diagnosed with a psychiatric illness is.

And I think that, you know, finding a support group or even founding a peer support organization is a really tremendous way to not just get support from other people, but give support to others who are going through similar very difficult experiences.

>> JOYCE BENDER:  I agree with you 100%.

And I hope you heard that one part where Alison said, you yourself starting a support group.

Because once again, do something.

Use Alison as a role model, do something about it.

And, you know, as to employers, do you have any word for employers today who are not hiring people with psychiatric disabilities?

>> ALISON HILLMAN:  I think that people really ‑‑ they need to give every individual an opportunity without discrimination.

>> JOYCE BENDER:  You need to focus on the ability.

>> ALISON HILLMAN:  That's correct.

>> JOYCE BENDER:  And, Alison, we are just so proud to have you in this country, and have you on this show today.

And I always end every show with a quote.

And this quote is from Justin Dart from the Second National Summit of Mental Health, where he said, "One of the first priorities of the empowerment society will be real rights for all, including people with psychiatric disabilities, and psychiatric survivors.

We must guarantee to each person with and without a psychiatric disability the tools to create the good life."

And doesn't that say it all?

This is Joyce Bender with Alison Hillman as our guest today.

And I will be back next week with "Disability Matters."

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