The Mighty StaffAn interesting conversation picked up on Reddit this week when a user posted the following question to people with disabilities: “What is something that we (presumably people without disabilities) do that we think helps, but it really doesn’t?” In just a day, more than 9,000 comments rolled in, and people living with all types of health conditions — from physical disabilities to developmental delays to invisible illnesses — offered a lot of great insight.If you’re unfamiliar with what it’s like to live with a health condition, you may not even realize when you’re not actually being that helpful. (That’s OK because that’s where we come in).

According to Redditors, here are eight common mistakes people make when they’re trying to help:

1. Helping without asking.

“I love when people help me, but please always ask first, and if I say, ‘No thanks, I’ve got it,’ then go on with your day. Or better yet, strike up a conversation!”

“A friend of a friend of mine who [uses a wheelchair] told us how people constantly offer to push her to her destination, and often times go to start push (sic) her along. One person said, ‘I’m helping!’ as he started pushing her in her chair. She yelled back, ‘No, you’re kidnapping!!’He stopped.”

2. Changing the way you talk.

“A wheelchair doesn’t make someone hard of hearing. Or stupid. Stop acting like it does.”“I’m hearing impaired (or hard of hearing, as the Deaf community prefers to put it). Do. Not. Yell at top volume, reeeaaaaaallllllly painfully slow. Just like it isn’t going to help a Spanish person understand the English you are speaking, it’s going to make you look real stupid to me… and everyone else we are around. It might work for you with Grandma, but I’m not your granny. Face me so I can read your lips, speak sharp and speak clear and we cool.”

“Don’t bend down to my level to talk to me, I can hear you perfectly well, and it’s incredibly demeaning.”“I have an autism spectrum disorder… Just talk to me like you would anyone else, and if I need something explained to me, I will ask. It’s that simple.”

3. Saying “But you don’t look [disabled, sick, etc.]“

“‘But you don’t look sick.’ ‘Well you don’t look like a doctor, but that’s just my opinion.’”“The thing is, people without visible disabilities… often hear ‘But you don’t look sick’ as an excuse for the person saying it to not take the condition seriously or not give proper accommodations. 

In those cases it’s not a compliment, it’s an accusation. It happens way more often than you’d expect, and since it’s not just annoying but often an obstacle to actually getting the help needed to get on with your life, it gets old fast.”

4. Feeling sorry.

“I don’t want to be pitied for something I can’t do anything about. It makes me feel less human/inferior.”“Pity is condescending, it ignores a person’s talents, relationships, accomplishments and joys and paints them as nothing more than a thing that suffers.”

5. Offering medical advice.

“My husband has chronic migraines. I can’t tell you the number of times someone suggests f**king Excedrin. ‘Oh really? I’ve lived with migraines for 20 years and I never thought to try over-the-counter Excedrin! Tell me more about how it helped you with a really bad headache once.’”

“Someone told me cashews could cure depression. I… may not have been the most tactful in my response.”

“Believe me, unless you are a researcher who specializes in my condition, you probably don’t know more about treatments than me.”

6. Calling a person “inspiring” or “brave.”

“I laugh when people call me an inspiration. If they only knew. No Hallmark movies to be made about me anytime soon. lol”

“This! I’m being praised for going to university and doing normal random everyday stuff. What am I supposed to do, sit on my ass all day and wait to die?”

“There’s nothing brave or strong about it. I exist. My strength and courage comes from what I do. Not what I am.”

7. Shrugging off an illness you can’t see.

“I have a chronic pain condition. Please don’t tell me it’s all in my head. Everything we experience, we experience through the brain. Of course it’s in my head.”

“Just because someone looks OK to you, doesn’t mean you should treat them like they’re faking it.”

8. Avoiding eye contact or keeping your questions to yourself.

“I have some form of Tourette’s syndrome. I love questions. Questions show concern and interest, and that is (for me at least) infinitely more preferable than awkward tension.”

“I only have one eye. Look, I already know I look different. I understand that your kid is curious. That’s a good thing. Let me answer their questions. They can learn something and find out that I’m still a nice guy even though I look different. Don’t make them feel afraid to talk to people who don’t look exactly like them.”

But remember, everyone is different.

“Many of the things that some people don’t want could likewise be things others might welcome. The point is, everyone is different and has different needs and feelings about their situation in life. My advice is engage in a conversation and ask if there is anything you can do. If the answer is yes, help. If the answer is no, fine. This applies to everyone — not just those people with a clear physical impairment.” 

Mary Evelyn Smith

She was maybe 6 years old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son as he wheeled in circles outside the sanctuary after church and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.

And then, without taking her eyes from his face, she said, “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like “confined to,” “suffers from,” and “bound.”

A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers and friends.

A system that tells her my son smiles is “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world, and I had missed my chance to set the record straight.

I realized I am very small. I am only one person.

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19 years old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.

“Something’s wrong with that kid,” he whispered to her. “Did you see his back? He can’t walk. So sad…”

I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very, very sad.

“It’s not sad,” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”

And then my heart turned to mush, and I closed my eyes to keep from crying.

I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.

More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.

I am only one person.

But I am not alone.

 This post originally appeared on What Do You Do, Dear?

CIL trainers realized accredited training for personal assistants in Vrsac from 16 until 18 of February this year. There were 15 attendants at this training and at the end of training all of them successfully passed the tests. Vrsac municipality decided to give  financial support to this service which will enable independent living to persons with disability.

Doctors and staff should not:

1. In general, examine a patient who uses a wheelchair in the wheelchair, even if the patient cannot get onto the exam table independently. It is less thorough and does not provide the patient equally effective medical services.

2. Deny service to a patient with a disability or chronic condition whom they would otherwise serve. Patients should be provided an accessible exam table, stretcher, gurney, or patient lift, or have trained staff assist the patient in transfer. (Though staff safety is important, a doctor’s fear of another staff member injuring themself does not justify refusing to provide equal medical care. This is where proper training and equipment come into play.)

3. Tell a patient with a disability or chronic condition to bring someone else along. If the patient chooses to bring someone, that’s their decision. A patient has a right to come alone.

4. Refuse to treat a patient who has a disability or chronic condition because the exam might take more time.

5. Avoid seeing a patient or making a patient wait longer than others to be seen.

6. Tell the patient “I know what you’re going through.” Even if the provider has the same condition or disability, no two people experience it the same way.

7. Make any comments about the patient’s appearance, efficacy, or experience that they wouldn’t say to any of their other patients.

Instead, doctors and staff should:

1. Ask their patients if assistance is needed, what works best for them, and what the best way to help is.

2. Address the patient directly, not the patient’s companion. Even if a patient has a disability or chronic condition, it does not necessarily mean they cannot speak for themselves or understand exam results.

3. Check in with the patient about their concerns and reasons for coming in, and make sure to address those by the end of the visit.

4. Respect the fact that patients know their bodies and sensations better than anyone else.

5. Instead of focusing on the condition or disability (unless medically relevant), offer well-rounded care like they would to any other patient.

6. Proactively seek continued education and training through local or national disability organizations on how to operate equipment, how to assist transfers, and how to position people with disabilities so that patients are comfortable.  

The 12 Pillars of Independent Living

To further clarify what Independent Living means in practice, the disabled people’s movement has identified a range of issues that need to be worked on and improved to make Independent Living a reality.

These “12 Pillars of Independent Living” are:

·             appropriate and accessible information

·             an adequate income

·             appropriate and accessible health and social care provision

·             a fully accessible transport system

·             full access to the environment

·             adequate provision of technical aids and equipment

·             availability of accessible and adapted housing

·             adequate provision of personal assistance

·             availability of inclusive education and training

·             equal opportunities for employment

·             availability of independent advocacy and self-advocacy

·             availability of peer counseling

Under each of the 12 Pillars (plus digital inclusion) there are a wide range of practical solutions to facilitate Independent Living, disability equality and social inclusion. However, we need to organise and work for political change if these goals are to be achieved.  

The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.

Disabled people developed the social model of disability because the traditional medical model did not explain their personal experience of disability or help to develop more inclusive ways of living.

An impairment is defined as long-term limitation of a person’s physical, mental or sensory function.

Changing attitudes to disabled people

Barriers are not just physical. Attitudes found in society based on prejudice or stereotype, or disablism, also disable people from having equal opportunities to be part of society.

Medical model of disability

The social model of disability says that disability is caused by the way society is organised. The medical model of disability says people are disabled by their impairments or differences.

Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness.

The medical model looks at what is ‘wrong’ with the person, not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives.

Social model of disability: some examples

·         A wheelchair user wants to get into a building with a step at the entrance. Under a social model solution, a ramp would be added to the entrance so that the wheelchair user is free to go into the building immediately. Using the medical model, there are very few solutions to help wheelchair users to climb stairs, which excludes them from many essential and leisure activities.

·         A teenager with a learning disability wants to live independently in their own home but is unsure how to pay the rent. Under the social model, the person would be supported so that they can pay rent and live in their own home. Under a medical model, the young person might be expected to live in a communal home.

·         A child with a visual impairment wants to read the latest best-selling book, so that they can chat about it with their sighted friends. Under the medical model, there are very few solutions. A social model solution makes full-text audio recordings available when the book is first published. This means children with visual impairments can join in cultural activities with everyone else.

From http://ollibean.com/2014/08/27/whats-the-social-model-of-disability/

By Jenny Weast

On October 14, 2014, I posted on Facebook that I was in desperate need of legal assistance and advice.

It’s pretty simple. My name is Jenny and I was paralyzed in a skiing accident when I was sixteen years old and became a C5-6 quadriplegic. Soon after, I was told by our government that I could still go to college, have a career, and become independent. There were programs put in place that would support me in my dream to do each of these things. If I put in the work, they would pay for my caregivers to assist with all my personal care, housecleaning, shopping, medical appointments, etc. So, I took the government up on that offer, and became a college graduate, high school teacher, and cheerleading coach who lived independently.

I had made it… family and friends that loved me, incredible caregivers to take care of the things I couldn’t physically do, my own small home, a modified van I could drive myself, coaching a National Champion cheer team, and 105 high school kids per day that I got to teach and inspire.

36 years after our original conversation, the government has decided I have become too successful.The Social Security Administration deemed I had more than the allowed $2,000 in my bank account. 27 years of providing them all of my work related expenses and financial information was disregarded. That this ‘over the limit’ amount occurred on the day I was paid by my school district was irrelevant; they had closed my case. The next agency to send me a denial notice was Medi-Cal. I took all my financial info to them and they baulked at it. My income was too high for their rules. So, my friends contacted our state representatives who in turn requested Medi-Cal take a closer look at my case. They decided my ‘share of cost to stay eligible’ for my caregiver funding was to be more than half of my take-home pay. I am to start paying this share of cost for my caregivers December 1, 2014.

I teach high school Math. It is not mathematically possible to live independently as a C5-6 quad on half of a teacher’s take-home pay. It’s just not possible to pay for your caregivers on your own. So basically, I can’t afford to work. The thought of losing my home, career and independence has devastated my world.

My friends and I have since contacted over a hundred lawyers, agencies dealing with disabilities, economists, politicians and authors on the matter. The responses have ranged from sympathy to hostility toward me, from people telling me to learn to live within the system to those advising me to fight Congress.

My disability and my wheelchair is not my identity. I’ve worked for three decades to just be a friend, family member and teacher. I feel so betrayed by my country’s government. Why didn’t they tell me all those years ago that there were hidden limits, hidden ceilings/restrictions to my success?

That in reality, as a quadriplegic, you can’t be a teacher and live independently in the United States.Our public funding system is terribly flawed when it comes to those who are truly disabled and want to work. I have contributed so much more in taxes and giving back to my community through my work than I have ever taken from our government. I hope those with the power to change the system will do the right thing.

Every person, regardless of his or her physical abilities, should be able to dream of and become a teacher.

Dear Society,Why has different become so intolerable in your eyes? Are you aware that your fierce tendencies of singling out individuals with any disparity, whether physical, emotional or spiritual, are cause of hurt? As a child, I was always told our world would become an incredibly boring place if we were all the same, and I still believe that to be true.Often times you insist you’re accepting of anyone and everyone, but are you really? Through my eyes, I see standards set for everything — an endless set of obtuse guidelines outlining how one can be viewed as desirable, attractive and valid. In adhering to them, people allow these criteria and rules to not only define who they are but also dictate how they live their lives.Why? Because everything has the potential to be perfect? Perfect, meaning we would all be the same. Skinny but not anorexic. Tall but not a giant. Wealthy but not obnoxious. Lovers but only with those of the opposite sex. That’s not perfection but deficiency — people unable to be who they are for fear of judgment, rejection and abandonment.

The word “perfect” is ambiguous, with everyone’s idea of perfection varying. My body certainly isn’t perfect. It doesn’t even come close to adhering to any definitive standard. You see, I was born different. I have achondroplasia, the most common form of dwarfism. Compared to the average woman my age, I’m short. My arms and legs are slightly disproportionate to the rest of my body and according to most, this defines me and often times can merit specific labels I find offensive.This idea of perfection is a smokescreen clouding everything that makes me unique — my accomplishments, my dreams, my story, all of which also make me a beautiful human being. No one else in this world has walked in my shoes. When you think about the enormous complexity of such a phenomenon — that everyone has their own inimitable story – that alone is beautiful.This criterion we call perfection is ever-changing.

Physically, I will never fall under such a namesake. My body is the way it is. Period. As an emotional and spiritual woman, I choose to look beyond the physicalities and do what lights me up — not what makes the majority happy. Besides, there is no one way to achieve beauty. Something better will always emerge: lifestyles, clothing, procedures, opinions.I’m fully aware that I cannot prevent these ideas of perfection from evolving. They will always be present. But, society, your casting a negative light on any person who’s different and expressing it as repulsive, is hurtful.

When I was a child, while everyone my age was learning to tie their shoes, ride a bicycle and say their ABC’s, I was learning that there was always going to be that person who was going to discount me because of my height. That time I went home crying because a classmate made others laugh at my expense was not going to be the last. People, even strangers, were going to force the phrase, “You can’t,” into my vocabulary because my adapted way of doing something was incorrect.These judgments became evidence to support your theory that I will never be good enough. My short stature, according to you, always warranting name calling, laughing, pointing and staring.

Why? Simply because I look different.At first, I was angry and sad, slowly allowing such harsh attitudes and judgments to stifle my light. But in realizing that dimming my happiness was allowing you, society, to win, I said, “Hell, no.” That extra weight on my shoulders was not going to slow me down. If anything, it’s fueled my fire, causing my light to burn brighter. As a result, I’ve been gifted a softer heart. My reaction to this decision is not one of retaliation but sadness — for you and your ignorance.More than anything, I wish to open your eyes and convince you to change your perspective. What if you began to see that anything different makes everything beautiful? What if we all stopped with the judgment and replaced it with love? Let’s erase these standards of perfection and embrace who we are inside and out.Take the time and look a little closer before you are too quick to judge.

In doing so, when you look at me, you would see that despite my different-ability, I’m a radiant, passionate, loving human being. As a woman living with short stature, I refuse to identify myself as anyone other than Kristen. A little person. An ambassador of love. A passionista and a dreamer. Lover of laughter, dance parties and hugs. Unafraid to show my sassy side. My personality making up for what I lack in inches. A woman determined to change how you view different, because different is beautiful. I see love and kindness like glitter, and I’m going to continue sprinkling that sh!t everywhere.

My belief is that those of us living with a handicap (or different-ability, as I prefer to call it) are put on this earth to make things exciting and spread the message of no separation. Although viewed as different, we are messengers of perseverance, tolerance, compassion and love. We deserve to be respected, we deserve to be heard and we deserve to be loved. Anyone’s differences should never warrant ridicule or discrimination of any kind.Strength comes in numbers, you know. Poet Ryunosuke Satoro said it best: “Individually, we are one drop. Together, we are an ocean.” Collectively, with more radical acceptance and kindness, we can do anything. Where there is distance, there is resistance, fear, sadness and anger. Perhaps you can drop the judgment and your seeing anyone not abiding to your paradigm as unworthy of love and respect.

Society, I encourage you to choose love. Have a more compassionate view of the human condition as a way to welcome what is rightfully so: we’re all different. Recognize these differences as bright splashes of color on what would be a lackluster canvas. Be open to beauty of all kinds. Think of it as a celebration. This life, the only one we are given, it goes by quickly. The more we focus on our visions; what makes our heart sing and puts our mind at ease, the more we erase hatred and unite into love.Stop judging and start loving. Perfectly imperfect is in. Authenticity cannot be bought. When you peel away the superficial, outside layers, we all experience pain, have dreams, know joy; inside, we are one. You can love different just as you love yourself, no matter what. After all, love knows no barriers and Different Is Beautiful.

With Love and Gratitude,

Kristen

This post originally appeared on Little Legs, Big Heart.

Throughout human history, technology has always impacted the way people live. The Industrial Revolution ushered in a new age of technology that raised the standards of living of people around the world and their access to goods and services. Today, technology is built in to every facet of daily living. The emergence of information and communications technologies have dramatically increased connectivity between people and their access to information, and further raised living standards.ICTs have indeed changed the way people live, work and play. However, not all people benefit from the advances of technology and the higher standards of living. This is mainly because not all people have access to new technologies and not all people can afford them.

Today, there are over 1 billion people living in the world with some form of disability. Around the world, persons with disabilities not only face physical barriers but also social, economic and attitudinal barriers. Furthermore, disability is associated with twenty per cent of global poverty, of which the majority live in developing countries. In spite of being the world’s largest minority group, persons with disabilities and the issue of disability has remained largely invisible in the mainstream development frameworks and its processes.

Since 1992, the annual observance of the International Day of Disabled Persons aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life.The observance of this year’s International Day of Persons with Disabilities (IDPD) provides an opportunity to further raise awareness of disability as a cross-cutting development issue.

The theme of this year’s commemoration, “Sustainable Development: The promise of technology” is timely, as it marks the conclusion of the period of the Millennium Development Goals (MDGS) in 2015 and the launching of the new development framework of sustainable development goals (SDGs).

Everybody’s fighting some kind of stereotype, and people with disabilities are no exception. The difference is that barriers people with disabilities face begin with people’s attitudes — attitudes often rooted in misinformation and misunderstandings about what it’s like to live with a disability.

Myth 1: People with disabilities are brave and courageous.

Fact: Adjusting to a disability requires adapting to a lifestyle, not bravery and courage.

Myth 2: All persons who use wheelchairs are chronically ill or sickly.

Fact: The association between wheelchair use and illness may have evolved through hospitals using wheelchairs to transport sick people. A person may use a wheelchair for a variety of reasons, none of which may have anything to do with lingering illness.

Myth 3: Wheelchair use is confining; people who use wheelchairs are “wheelchair-bound.”

Fact: A wheelchair, like a bicycle or an automobile, is a personal assistive device that enables someone to get around.

Myth 4: All persons with hearing disabilities can read lips.

Fact: Lip-reading skills vary among people who use them and are never entirely reliable.

Myth 5: People who are blind acquire a “sixth sense.”

Fact: Although most people who are blind develop their remaining senses more fully, they do not have a “sixth sense.”

Myth 6: People with disabilities are more comfortable with “their own kind.”

Fact: In the past, grouping people with disabilities in separate schools and institutions reinforced this misconception. Today, many people with disabilities take advantage of new opportunities to join mainstream society.

Myth 7: Non-disabled people are obligated to “take care of” people with disabilities.

Fact: Anyone may offer assistance, but most people with disabilities prefer to be responsible for themselves.

Myth 8: Curious children should never ask people about their disabilities.

Fact: Many children have a natural, uninhibited curiosity and may ask questions that some adults consider embarrassing. But scolding curious children may make them think having a disability is “wrong” or “bad.” Most people with disabilities won’t mind answering a child’s question.

Myth 9: The lives of people with disabilities are totally different than the lives of people without disabilities.

Fact: People with disabilities go to school, get married, work, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, vote, plan and dream like everyone else.

Myth 10: It is all right for people without disabilities to park in accessible parking spaces, if only for a few minutes.

Fact: Because accessible parking spaces are designed and situated to meet the needs of people who have disabilities, these spaces should only be used by people who need them.

Myth 11: Most people with disabilities cannot have sexual relationships.

Fact: Anyone can have a sexual relationship by adapting the sexual activity. People with disabilities can have children naturally or through adoption. People with disabilities, like other people, are sexual beings.

Myth 12: People with disabilities always need help.

Fact: Many people with disabilities are independent and capable of giving help. If you would like to help someone with a disability, ask if he or she needs it before you act.

Myth 13: There is nothing one person can do to help eliminate the barriers confronting people with disabilities.

Fact: Everyone can contribute to change. You can help remove barriers by:

·        Understanding the need for accessible parking and leaving it for those who need it

·        Encouraging participation of people with disabilities in community activities by using accessible meeting and event sites

·        Understanding children’s curiosity about disabilities and people who have them

·        Advocating a barrier-free environment

·        Speaking up when negative words or phrases are used about disability

·        Writing producers and editors a note of support when they portray someone with a disability as a “regular person” in the media

·        Accepting people with disabilities as individuals capable of the same needs and feelings as yourself, and hiring qualified disabled persons whenever possible 

Easterseals.com 

A month ago, exactly, Center for Independent Living Serbia become the first DPO officially received Licence for providing personal assistance service. Licence was signed at Ministry for Labor, Employment and Social Policy.

Another DPO which whould be allowed to provide personal assistance service is Living Upright from Novi Sad. We are expecting that the other CIL branches will  follow us and we are really proud of our achievemnt.

EU Delegation in Serbia, EIDHR program, supported the project “Joint Forces for political and economic empowerment of persons with disabilities” which was implemented by Centre for Independent Living Serbia in 2013/2014.  Partner on this project was National organizations of persons with disabilities Serbia.