Archive of ‘Community’ category

Black and Disabled: A Death Sentence

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Sign disable black lives matter too

Violence against people of color has been in the news a lot. Police are using too much force against them. This is even worse for people of color with disabilities.

This fall, police killed Keith Lamont Scott. He had a brain injury. Charles Kinsey helped people with disabilities. He was taking care of a patient with autism. He was also shot. More than half of people hurt by police have a disability. This should cause us to worry.

We do not know enough about disabilities. People in charge do not either. This puts people at great risk to be hurt by people in charge.

People in charge should:

  • Know how to spot disabilities
  •  Not jump to conclusions
  • Know that many disabilities cannot be seen
  • See their own racial biases

Every human has the right to feel safe. They should feel safe within their own skin. No matter what it looks like. No matter who is inside.

References:

Chokshi, N. (2016, October 17). Keith Lamont Scott was killed by two gunshot wounds, family autopsy finds. Retrieved October 17, 2016 from The New York Times

Harrell, E. (2014, February 25). Crime Against Persons With Disabilities, 2009–2012 – Statistical Tables. Retrieved October 28, 2016, from, Bureau of Justice Statistics

Neyfakh, L. (2016, July 21). Charles Kinsey did everything he possibly could not to be shot by police. Retrieved October 28, 2016, from Slate

Looking at the whole person?

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Roles

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black and white masks

Have you ever stopped to think how many roles you played today? I bet you would be surprised at how many. For me, today I was a human service worker, shopper, friend, student, cook, and pet owner to name a few. The roles we play in life vary in how we and others value them. Sometimes I am Assistant Vice President, which I deem a valuable role. Others may not feel the same way. They may prefer to pick up and take off whenever they please. At times, I play the role of Democrat. Those who do not value politics or my views may not see this as an important role.

A Human Service View

I spend a lot of time at work reading or hearing about people with different abilities. Everyone has his or her own goals and plans for the future. They also have their own stories. I may never meet them in person, but I learn about them through their stories. After taking a class *, it occurred to me that their stories are only a piece of what makes them “them”. What I realized is the way a person is described places him/her into roles. These roles are not always valued in our society.
When I started working in human services, there was a focus on Person Centered Planning (PCP). The idea of PCP is care centered around the person. At the time, it seemed to make sense. Now I fear we may have missed the point. Much of the focus for people I work with is learning new skills. We work on life skills to help the person fit better in their world. While working on life skills we cannot forget the importance of social skills. There is value and balance when both of these skills improve.

How can we change?

So how do we change our ways? How do we help someone gain valued social roles? It starts with understanding what society values. Today’s society places a high value on money, health, youth, and freedom. These are words I do not typically see in the stories I read about people. In my job, I sometimes find the words used to describe people set limits on the person. We focus on what people cannot do instead of what they can do.
A shift to focusing on abilities and socially valued roles is essential to overall quality of life for anyone. Every person is valuable, but not all roles are valued. Let’s celebrate people for who they are instead of describing people in terms of what they are not. For more information on Social Role Valorization, community inclusion, and similar topics, check out the websites listed below.

* Dr. Wolf Wolfensberger’s theory of Social Role Valorization

Community Training a Service Dog

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palm out on a stop signAfter 13 months I am ready to take Orenda with me into the world and get her used to the ways a service dog has to act, and not act.  It has taken me this long because she was rescued and so she hadn’t lived in a house and had to learn that.  She would destroy things in the house, like couch pillows.

She was anxious in a new place and when I was gone.  So I taught her:

  • relax
  • pee and poop outside
  • chew rubber toys not shoes and library books

For a while I had to put up a gate in a room and keep her there when I left.  But not now.  Not for some time now.

Also, I have low energy because of being depressed for a long, long time.  So I haven’t been as on top of training as I could have been.  Should have been?  Is there a point in saying that?  It just is.  I have learned that the state of being Disabled isn’t bad or good – it just is.  It took a long time to get that, when everyone tells you it’s sad and wrong.

So, I have been teaching Orenda, my tall yellow dog, to not pull on leash or in harness.  We work on it a lot in small bits of time.  “

  • “No pull.”
  • “Over.”
  • “Good Heel.”
  • “Walk Nice.”
  • “Good Walk.”
  • “Go Ahead.”
  • “Yes!”

Community training is taking a dog out into the world with you, to get him or her used to everyday things in the world.

  • How to ride the bus and subway.
  • Where to sit or lie when on them.
  • Not to lick the floor!
  • To leave dropped food alone.
  • Not to drink from puddles.
  • Not to lunge after dogs, squirrels, birds or cats.
  • Not to bark.
  • Not to go over to people unless told to.
  • How to go through revolving doors.
  • On and off escalators.
  • Turnstiles.
  • To go under tables in restaurants.
  • To stay on a mat until released.
  • To ignore people and other dogs.

You get it.

Last Saturday, I took her to class to see how she did.  I had been doing “Go To Bed” in the house with her.  I brought a mat I wove for my last Service Dog.  Before I sat down in class, I put down the mat.  I told Orenda “Go to Bed.”  I had to remind her a few times.  She tried to inch toward me so her butt was on the mat and the rest of her closer to me.  She did really well.  Better than I hoped.  She was very good.  I told her.

If you see a dog with a person, take a minute to look closely.  It might be a service dog.  They won’t always have a harness on.  Many do, but not all.  They don’t have to.  Some people train their own, like me. Before being a working dog, service dogs are ‘in training’.  They have to learn a lot before being fully trained.  My point is:

  • Don’t pet a service dog.
  • Don’t feed a service dog.
  • Don’t bark or meow at a service dog.
  • Don’t talk to a service dog.

Not before asking the person, the handler. This sounds simple, but all of this has happened to me with my last dog.  And he wore a red harness on black and white fur!

A lot of people seem to wish they could have their dog go everywhere with them.  They think it would be fun.  They are jealous and even sometimes pretend their dogs are service dogs!  This may be against the law. It makes watchers doubt service dog users’ need for dogs if you don’t “look like you need one” to other people.  There are many types of Disabilities, most you can’t see or tell.  You can begin to see how much work it is to train a service dog, even before task training begins.

People use service dogs because we need to.  It’s not fun to have to take care of and watch out for a dog and yourself all day long.  Even the best-trained dog is still a dog.  I have to take all the dog’s stuff with me too: food, water, bowls, a mat.  In winter, a coat, maybe boots.  Salt and ice hurt their feet.  Even if you love dogs, please leave that cute dog on the T alone and don’t distract them.  They could be working.

See this article that explains what makes a service dog.  Section II is the part to read.

The article is from the ADA (Americans with Disabilities Act) National Network publication “Service Animals and Emotional Support Animals”.

On Language

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drawing of a human head with letters inside.I speak English. You speak English. But the English we speak is not the same as our grandparents spoke. The English your grandparents spoke was not the same as was spoken in the 1800s. Language, like people, changes over time.

In the 1960s and 1970s, people used different words than we do today. Some of these words we think of as mean.  ‘Retarded’, ‘Crippled’, and ‘deaf and dumb’ were all common once.  Over time, people saw how hurtful these words were. Then they stopped using those words.

In the 1990s, some people had a new idea they called ‘person-first’ language.  It means you always talk about people before you talk about their disability. So, instead of saying someone is:

  • blind, you say they have vision loss;
  • physically disabled, you say they use a wheelchair;
  • autistic, you say they have autism

In the past few years, some disability rights activists have been saying they do not like person-first language. For a number of reasons, they like identity-first language, phrases such as:

  • autistic person
  • blind person
  • wheelchair user

They say there is nothing wrong with being disabled. I, as a disabled person, agree with them. The people and culture around us have said being disabled is bad. It is other people, who are not disabled, that said disabled people were not human beings. Some people say talking about the person first reminds everyone we are people. Disabled people know we are people. We do not need to be reminded.

There is another problem with person-first language. It says people and their disability can be separate. If you have something, then you can one day not have it. But a disability is not like a broken leg. It cannot be cured. For the vast majority of disabilities, people just learn to live with them.  As Ari Ne’eman, president and founder of the Autistic Self Advocacy Network once said, ‘When I go on a trip, and the airline loses my luggage, I still arrive with my autism.’

Lydia Brown, who proudly identifies as autistic, has written about this in great detail. Her article gives links to different people’s thoughts from around the web. It talks only about autism. But, it is not just the autism community that this is happening in. Other disability communities are also talking about identity-first language.

Changes that need to happen in the day program’s rooms

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edlerly people making cookiesI work at a home care with people with disability. They go to the day program and work all day. The day program has rooms they are placed into depending on their ability to work. I think how the individuals are placed into those rooms needs to change. The guys are not put there the right way. I think they should put in the room people that could help each other to be better than they were before. They should put in those rooms people that can work together. For example, in a room they should not put a blind and a person who does not talk together because it makes it hard for them to work in-groups. It makes that person not be better. He or she will learn nothing from each other.

For more information visit: day program website

Do you need help at home?

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a person helping an older personAs a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.

Who is eligible?

  • A person with a disability
  • Must be 16 years of age or older.
  • Can not live alone
  • Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
  • Must be approved by a doctor.

Do you have to pay?

NO!
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.

Mental Illness Knows No Prejudice

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Human Head Silhouette with Puzzle Pieces as the BrainMental illness knows no prejudice. It does not recognize gender or age. It does not recognize wealth, poverty or fame. It does not recognize social status, race, or religion. Nor does it recognize ignorance or denial. Mental illness is a powerful thing. It lives and grows; it affects anyone it chooses. It has no limits or boundaries.

Cause
We must look at mental illness analytically, and not as this source of “evil” everyone keeps talking about. We need to look at the root cause of terrible acts, not just the means to the end.

In regard to acts of violence, society continues to look at reactive measures, such as random forms of gun control (i.e. banning high capacity magazines and assault type rifles), and increased jail sentences. I’m not suggesting these aspects shouldn’t be addressed. They are contributing factors and require a realistic focus. But, they are not the answer in matters such as these.

We need to get ahead of these acts, not behind them. We need to be proactive and adopt a complete, multi-dimensional approach in addressing the root causes behind these perverse acts. Most notable are the tragedies involving gun violence, which tend to be enlarged by the media. But let’s not forget the incidents of NFL players who have fallen victim, or the celebrities who have lost their battles with the day-to-day struggles of these same illnesses. I can go on and on. I think you get the point. Although there are many differences between these acts, they all have one common factor underlying the root cause…mental illness.

Experience as a Guide
I have worked in the mental health field for a number of years now. I have seen the effects of mental illness on human beings. I have seen the repeated cycle it tends to take, and how the victims of these illnesses often become the offenders. This chain must be broken in order to stop this violence. Early intervention and a multi-disciplined approach are the keys.

Unfortunately, the mental health system in this country does not adequately address this issue. We disregard it. Funding is not given to sufficiently address these matters. They have fallen by the wayside. We have closed institutions and sent mentally ill people to the streets. We mainstreamed affected children into regular classrooms and just labeled them “problematic”.

We continuously place a stigma on mental illness. This makes it difficult for social acceptance, causing it to repress and eventually resurface in different forms. We need to think at a higher level as a society. Blaming such events on poor societal control is not prudent. Once again, dig a bit deeper. Americans work twice as much as other countries. Yet we have far less time away from work (major stressor) as other countries allow. Perhaps this might have an effect on mental health in America?

Where do we go from here?
Please know I am not attempting to justify or minimize these acts. I am a father, a husband, and human service worker. I too struggle to understand these tragedies. I cannot even begin to imagine the pain caused in these situations for the victims, families, and the offenders. They certainly need support in many ways. I pray they will find peace and eventually heal. I have faith in the resilience of the human spirit.

Mental illness is not a choice, just as addiction and sexual orientation are not. It chooses you. It is not a wonder. It is real. We must address it as a society and as a whole. I encourage you to find ways to accept and support mental health issues in our communities. We must advocate for these issues at all levels within our government. We must work together to ensure adequate resources are made available to address this deficit and encourage further research. We must get at the root of the cause before a spark ignites it.

Lastly, as human beings, we must also demonstrate compassion, support, and tolerance towards each other, and have faith we will prevail. Just as mental illness knows no prejudice, neither does mental health.

For more information, visit:
Improving Mental Health and Addressing Mental Illness
National Institute of Mental Health

Including Children and Youth with Special Needs in Religious Education Settings

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children with notebooksMany parents of children with special needs choose not to put their children in religion classes and youth groups. There are many reasons for this. Some parents are afraid their child will have trouble during a quiet moment and disrupt the class. Others fear volunteer instructors will feel burdened by their child’s needs or behaviors. Some might feel ashamed of their child or afraid of what their child might do or say. They might avoid such public settings. Indeed, there are challenges in creating programs for all children, but these guidelines can help things go smoothly.

What Parents Can Do

Parents sometimes choose not to be direct about their child’s special needs. This causes extra stress in religious communities. For example, the instructor and program director might worry about a child, and wonder if the parents know their child has a learning disability or ADHD.  When parents are forthcoming about their child’s needs, supports can be put in place. The leader and child can get off to a good start when parents meet with the program director and talk about how to best help their child.

What Religious Educators Can Do

Including youth and children with special needs will bring about some challenges, but religious educators help.

  • Adults can be added to improve the adult-to-child ratio.
  • Extra time can be scheduled for parent communication.
  • Volunteer staff can be offered support and training.
  • Grants can be obtained to cover assistive technology, American Sign Language interpreter services, or professionally trained one-to-one aides.

What Inclusion Can Do

Many benefits come from including children with special needs in religion classes and youth groups.

  • Children with special needs receive religious instruction and feel part of the group.
  • All children and teens gain experience from being around a variety of peers. They likely learn that others are not so different than themselves.
  • As more children and teens with special needs attend classes and services, the community culture changes and including all children becomes the usual way of doing things.
  • Parents of special needs children enjoy the support of their community.

Integrating children with special needs in religious education settings benefits the community as a whole. This, in turn, has a positive effect on our society.

When You Need A Friend

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happy young girls raising hands together in park.

Childhood friendship

Making and keeping friends is hard for anyone. This seems to become more difficult when people have a disability involving communication, the characteristics of which are “deficits in using communication for social purposes” or “persistent deficits in social communication and social interaction across multiple contexts.” Most kids can say they have friends in the neighborhood, school friends or church friends. For kids with Autism Spectrum Disorder or Social (pragmatic) Communication Disorder, developing friendships requires a lot of effort and provokes anxiety. It appears that the parents or teachers must make efforts to create friendships. I have been creating such friendship opportunities for my children all through their lives. When my daughter was young and attending an inclusion classroom, I called parents of typically developing children to arrange play dates for her. Some parents were really nice and met me half way by bringing their child to play with mine or meet her at the playground. I also called parents of the other children with special needs in the classroom. Those were the ones that happily met me all the way, for they were experiencing the ostracism that comes from having social skills challenges. Of course, that was possible as long as we were attending the local school. When my child was placed out of district, it became more difficult to have play dates and it required a lot of effort and strategic planning. Teachers had to be convinced of the need for friendships so that they would share our telephone number with a child that my daughter talked about at home. Then, we needed to call the parent, introduce ourselves, explain our situation and suggest a meeting place that was neutral and equidistant. Seeing a friend involved travelling, visiting, travelling and avoiding a meltdown.
Many times I questioned who really wanted the friends – my daughter or me? Did I want for her something that I thought all other kids had? Was she happy with one or two friendly acquaintances or did she need several friends? She is now an adult and still friendships continue to be hard. She needs help navigating the adult social world, where there are more unspoken conventions than in the children’s world. Participation in activities that are not located in our town means that she meets people from other towns and since she doesn’t drive, she needs transportation to and from meeting places. However, now that she is an adult, she can tell me that friendships are important to her and we make all possible efforts for her to see friends. That is something we can all understand as we all need friendships. What is hard to understand is that as children with disabilities become adults the opportunities that they have to make friendships with neurotypical individuals are almost nonexistent. There are programs organized by disability organizations to encourage socialization. Such activities are usually attended by people with disabilities and not many neurotypical individuals attend. Furthermore, those neurotypical individuals who do attend are often younger – they notice less the symptoms of socially and communicationally challenged persons, especially their lack of maturity. Yet younger neurotypical children do not serve as peer with age-appropriate interests. We must continue to look for opportunities to provide individuals with disabilities the opportunities to make meaningful social interactions in the communities where they live. I am not sure how to accomplish this but I think the Real Lives bill might be a step forward.

Municipal Advocacy: Disability Commissions

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town building

Town Building

Approximately 150 cities and towns in Massachusetts have a Commission on Disability, does yours?

Disability Commissions are an advisory boards appointed by municipal leaders formed to help promote compliance with federal and state laws, represent the interest of individuals with disabilities in municipal government, and act as a resources for individuals with disabilities.

Common issues addressed by many Disability Commissions include handicapped parking spot abuse and implementing curb-cuts on sidewalks, but each commission is able to respond to the local needs of their community.

Almost all Commissioners are volunteers, and at least half of the members of each Commission are individuals with disabilities. Most Commissions meet monthly, and meetings are open to the public.

I encourage you to find out if your city or town has a Disability Commission, and if they do, make a point to attend the next Commission meeting.

View a list of Disability Commissions in Massachusetts available from the The Massachusetts Office on Disability web site

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