Within the project Strengthening political participation of persons with disability in Serbia, Parliamentary Working Group on Disability was established in Serbian Assembly in Belgrade on February the 3rd 2016.

At this moment there were 15 MPs in PWGD form different political parties, who are willing to work in this group and try to do more  efficient work related to disability issues.

Photos from this event could be seen at http://www.cilsrbija.org/galerija/thumbnails.php?album=73

Training for personal assistants was held in Velika Plana from January 29 until 31 2016. Accredited program for PAs performed Ivana Gvozdenovic and Dimitrije Gligorijevic upon request of DPO Volja za zivotom. Photos from training, attended by 14 potential PAs can be seen on http://www.cilsrbija.org/galerija/thumbnails.php?album=72

Strengthening political participation of PWDs in Serbia project, funded by USAID and implementing by CIL Serbia in partnership with NAPWDs and COD, was promoted yesterday for municipal representatives from Bor and Negotin, as well as for representatives of DPOs from Bor and Negotin.

We are expecting good mutual cooperation and this promotion was covered by local media https://youtu.be/P1E6MVyyIm8

The last Round table on compliance of national legislation with CRPD was held in Smederevo November 30th 2015. The topis of this round table was social protection and presenter was Vladan Jovanovic, expert in this area.

There were more than 40 participants, representatives of DPOs from Smederevo, Nis, Bor, Kragujevac, as well as representatives of local authorities from Smederevo.

There are series of Round tables on the most important areas for the quality of life for persons with disability.

Round table on Education and Accessibility was held in Sombor, November 3rd 2015. Report  on adjustment of Serbian legislation with UN Convention of rights of PWDs in these two areas was presented by Milica Mima Ruzicic Novkovic. There were representatives of DPOs and local decision makers.

Round table on Employment and Health care was held in Kragujevac, November 10th 2015. Report on adjustment of Serbian legislation with UN Convention of rights of PWDs in these two areas was presented by Lepojka Carevic Mitanovski. There were representatives of DPOs and local decision makers.

General conclusion is that Serbian legislation is quite adjusted with UN Convention but there is a gap between legal implementation and measures for their monitoring and sanctions if something is not implemented according to the law.

september 14, 2015 by Philip Murphy 

Inclusive education does away with the practice of segregating students with learning and/or physical challenges from the rest of the student body. While the practice of inclusion places extra demands on students and facility logistics, there are numerous benefits to all students, both disabled and non-disabled.

Teachers in inclusive classrooms must incorporate a variety of teaching methods in order to best reach students of varying learning abilities. This has benefits even for those students who would be placed in a traditional classroom, as this increases their engagement in the learning process. Even gifted and accelerated learners benefit from an environment that stresses responsiveness from all students.

Perhaps most importantly, inclusive classrooms encourage open and frank dialogue about differences as well as a respect for those with different abilities, cultural backgrounds and needs.

Despite the benefits, there still are many barriers to the implementation of inclusive education. A UNESCO article, “Inclusive Education,” outlined many of them, including:

Attitudes: Societal norms often are the biggest barrier to inclusion. Old attitudes die hard, and many still resist the accommodation of students with disabilities and learning issues, as well as those from minority cultures. Prejudices against those with differences can lead to discrimination, which inhibits the educational process. The challenges of inclusive education might be blamed on the students’ challenges instead of the shortcomings of the educational system.

Physical Barriers: In some districts, students with physical disabilities are expected to attend schools that are inaccessible to them. In economically-deprived school systems, especially those in rural areas, dilapidated and poorly-cared-for buildings can restrict accessibility. Some of these facilities are not safe or healthy for any students. Many schools don’t have the facilities to properly accommodate students with special needs, and local governments lack either the funds or the resolve to provide financial help. Environmental barriers can include doors, passageways, stairs and ramps, and recreational areas. These can create a barrier for some students to simply enter the school building or classroom.

Curriculum: A rigid curriculum that does not allow for experimentation or the use of different teaching methods can be an enormous barrier to inclusion. Study plans that don’t recognize different styles of learning hinder the school experience for all students, even those not traditionally recognized as having physical or mental challenges.

Teachers: Teachers who are not trained or who are unwilling or unenthusiastic about working with differently-abled students are a drawback to successful inclusion. Training often falls short of real effectiveness, and instructors already straining under large workloads may resent the added duties of coming up with different approaches for the same lessons.

Language and communication: Many students are expected to learn while being taught in a language that is new and in some cases unfamiliar to them. This is obviously a significant barrier to successful learning. Too often, these students face discrimination and low expectations.

Socio-economic factors: Areas that are traditionally poor and those with higher-than-average unemployment rates tend to have schools that reflect that environment, such as run-down facilities, students who are unable to afford basic necessities and other barriers to the learning process. Violence, poor health services and other social factors make create barriers even for traditional learners, and these challenges make inclusion all but impossible.

Funding: Adequate funding is a necessity for inclusion and yet it is rare. Schools often lack adequate facilities, qualified and properly-trained teachers and other staff members, educational materials and general support. Sadly, lack of resources is pervasive throughout many educational systems.

Organization of the Education System: Centralized education systems are rarely conducive to positive change and initiative. Decisions come from the school system’s high-level authorities whose initiatives focus on employee compliance more than quality learning. The top levels of the organization may have little or no idea about the realities teachers face on a daily basis.

Policies as Barriers: Many policy makers don’t understand or believe in inclusive education, and these leaders can stonewall efforts to make school policies more inclusive. This can exclude whole groups of learners from the mainstream educational system, thereby preventing them from enjoying the same opportunities for education and employment afforded to traditional students.

Overcoming the many barriers to inclusive education will require additional funding, but even more importantly, it requires the change of old and outdated attitudes. Studies support what many classroom teachers know by experience: that the benefits inclusion provides to all students easily justifies the effort.

The estimated one billion people living with disabilities worldwide face many barriers to inclusion in many key aspects of society. As a result, people with disabilities do not enjoy access to society on an equal basis with others, which includes areas of transportation, employment, and education as well as social and political participation. The right to participate in public life is essential to create stable democracies, active citizenship and reduce inequalities in society.

Persons with disabilities must be able to fulfil their role in society and participate on an equal basis with others. It is important to focus on the ability and not on the disability of an individual. Often, the societal image of persons with disabilities is impacted by attitudes based on stigma and discrimination, as well as archaic ideas about disability and persons with disabilities that are often the greatest barrier to their full and equal participation in society and development on an equal basis with others. It is important to note that disability is part of the human condition, and that all of us either are or will become disabled to one degree or another during the course of our lives.

By promoting empowerment, real opportunities for people are created. This enhances their own capacities and supports them in setting their own priorities. Empowerment involves investing in people – in jobs, health, nutrition, education, and social protection. When people are empowered they are better prepared to take advantage of opportunities, they become agents of change and can more readily embrace their civic responsibilities.

Sub-themes for IDPD 2015:

• Making cities inclusive and accessible for all
• Improving disability data and statistics
• Including persons with invisible disabilities in society and development

Making cities inclusive and accessible for all

It is estimated that by 2050, 66% of the world’s population will be living in cities. The United Nations’ Third Global Conference on Housing and Sustainable Development – Habitat III  – will take place in 2016 to review the progress, experience and lessons learnt in the past and to design a “New Urban Agenda”. This Agenda of focused policies and strategies is hoped to harness the power and forces behind urbanization. Habitat III will provide an important platform for the world’s urban development policy-makers and practitioners, as well as those working in the field of disability to review current practices and identify opportunities for change.

Importantly, the New Urban Agenda must ensure that future cities, towns and basic urban infrastructures and services are more environmentally accessible, user-friendly and inclusive of all people’s needs, including persons with disabilities. The International Day will be used to discuss and present some best practices of inclusive urbanization.

The Mighty Staff

Aug 04, 2015

·          

Describing a disability, disease or disorder to someone who doesn’t understand it can be tricky — particularly if the condition isn’t common or visible. Overly scientific descriptions aren’t usually easily understood and ignoring the topic entirely isn’t an option. So, what is a good way to describe a disability to someone who isn’t familiar with it?

To learn more about the tactics people use to describe disability, we turned to the people who do it every day. The Mighty asked our readers on Facebook to share how they describe their own or a loved one’s disability to people who don’t understand it. The responses we received were informative, creative and incredibly helpful.

Here’s what they had to say:

1. “My daughter has dyspraxia, which is poor motor planning because of slow neural transmissions. I describe her to others as being a super-computer with a dial-up modem.” — Stephanie Bruttig Brander

2. “I explained [my] cerebral palsy like this: ‘When you go out and play in the snow, come inside and can hardly move because your body is so stiff because of the cold? That’s how I am 24/7.’” — Desiree Ferguson

3. “My son has attention deficit hyperactivity disorder (ADHD). I tell folks to imagine their messiest bedroom and being told they had to keep it messy 24/7 and be productive. That’s how my son feels when people tell him he ‘just needs to be organized.’” — Amy Jones 

4. “My son has autism. I tell people the best way to describe what my son deals with daily is to imagine being in a foreign country. You do not speak their language, they do not speak your language and you can’t communicate your needs to get help. You’re lost, hungry, thirsty, etc… How frustrated would you be? I believe this is a great visual aid for others to understand.” — Theresa Angrisano 

5. “To explain my mom’s schizophrenia, I told the children in the family that [she] had more things going on in her brain than most people. If they didn’t understand what she told them to do, then they should go to another grown-up right then. It made sure that the child didn’t disrespect [my mom] by ignoring her.” — Jean Dial-Teague

6. “We say our daughter has cerebral palsy. Then we ask the person to flex their muscles and imagine having to hold the flex position for 18 hours. When we get the normal response, ‘Oh, that’s hard and would hurt,’ we say, ‘That’s what it’s like for our daughter.’” — Deirdre McDaniel 

7. “I explain that having systemic scleroderma is like having a vat of concrete poured into your veins, skin, and organs. Eventually everything becomes so hard to move that you are paralyzed and everything shuts down. You slowly turn into a living statue.” — Chanel White

8. “[I explain it] with truth. My son has many scars from multiple surgeries. He is 6 years old and we always discuss his health, scars and disabilities with honesty. I prefer questions rather than stares or shooing people away.” — Jenn Budd

9. “I’ve told people to imagine, ‘If your lips were superglued and you couldn’t get anything out that you were thinking about, wouldn’t that frustrate you as well?” —Jimalea Jones

10. “For many years when people would ask what was wrong with our son, my wife and I would just say it was cerebral palsy and get it over with. It’s only been over the last year that we truly explain David’s condition of holoprosencephaly. Big words normally scare most people away, but those who truly want to learn will listen while we explain his brain developed differently than ours. We actually look forward to those questions now and the chance to educate others in our area.” — Bill Best 

11. “It’s like being blind and just when you just get to where you know the layout of a room and are comfortable with it, someone comes in and moves the furniture around. That’s the mind of a child with ADHD and cognitive disorders.” — Jeannetta Harris 

12. “You know how there are stressors in your life that make you nervous or anxious? Those situations make [my son] feel like the world is caving in and he has no control over his behavior because he is tapped out.” — Kimberly Konig Marley

13. “I have single-sided deafness of unspecified origin. My description of it? It’s like living in a wind tunnel with F-18 airplanes flying overhead 24/7.” — Donna Allgood Kuchem

14. “My sons are both undiagnosed. They have global physical and cognitive delays and are nonverbal, but they understand way more than people assume. I usually explain to children that they are just like everyone else but their bodies work differently and they use an iPad to communicate, which most kids find very cool.” — Anna Siderakis-Karounos 

15. “I have Tourette syndrome, and when I describe my tics to people who aren’t familiar or who only know what they’ve seen in the media, I tell them having a tic is like a sneeze. You can’t always keep it in, and more often than not, if you suppress it, it will come back later with a vengeance. Most people tend to get a grasp on Tourette’s that way, because everyone sneezes and knows what that feels like.” — Lauren Elaine Childress

16. “My little brother once asked, at 3 years old, why he didn’t have crutches like me. I told him, ‘Because my legs aren’t as strong as yours, but that’s OK.’ He accepted that and had a simple, positive explanation to take forward with him.” — Tonia Says 

17. “My son has apraxia, which I explain [like this]: ‘It’s like a marble in a drain. Sometimes the water can pass, other times it gets stuck.’ His speech processing is exactly like that.” — Sherry Mitchell 

18. “I have depression and anxiety disorders. I [explain it] like this: Depression and anxiety are teammates and I’m the opposing team. Their one and only goal is to drag me down. They make me paranoid, they make me feel useless and they steal all of my energy and motivation. However, sometimes, they go on vacation. I never know how long the vacation will last, but I get stuff done while they’re away, because I never know when they’ll come back.” — Sarah Cecilia Flanigan

19. “I had to explain [my daughter’s seizures] to her 1st grade class after she had one at school. I explained like this: ‘[My daughter] has something special about her. Her brain has seizures, or, like her brother calls it, ‘her shakes.’ She is what we call epileptic. I know it’s scary, but when she has her shakes, it’s important to stay calm and go get an adult so they can help her. If you can’t find an adult, get her brother, he’ll know just what to do.’ Then, we began our conversation of what our siblings help us do and why being a ‘helping friend’ is so important.” — Crystal Wright

20. “This is how my daughter describes her sister with autism: ‘It’s like we all have a red power cord, and her cord is blue. She’s just wired differently, but she functions just fine.’” — Julie Preston Bean 

21. “I tell people who ask about my son’s multiple conditions that he was in such a hurry to see the world he showed up a little early. He has some issues but he is awesome and happy and that’s what matters.” — Jessica Hirschenhofer 

22. “[Living with depression] is like treading water and never reaching land.” — Barbara Winthrop 

23. “We usually say something like, ‘[Our daughter] has Rett syndrome. It’s a rare neurological disorder caused by a genetic mutation which makes it hard for her to use her hands and legs properly. Sometimes her hands do things she doesn’t want them to do. She can’t speak, but she can hear you just fine and she is very smart!’” — Grace Fox 

24. “[I explain my son’s] Down syndrome to the kids at his school by using an example they can relate to. I came up with the concept of two bears made out of Legos that are very similar, but with one difference — an extra chromosome or an extra ‘lego-peg.’” — Ingrid Muschta 

25. “[My adult son has] severe social anxiety, depression, obsessive compulsive disorder (OCD), Tourette syndrome and is on the autism spectrum. When he was working I explained [his anxiety] to his supervisors as follows: ‘Imagine you are terrified of spiders. When you get to work, you have to wade through a giant pit of spiders. When you get to your desk, you think of nothing other then the fact that you must pass through the pit of spiders on your way home. Once home, you obsess about the fact that you have to go back tomorrow.’” — Wanda McCallin Oleson

26. “Our son is visually impaired. He has underdeveloped retinas, nystagmus and poor vision. The way I explain his nystagmus is imagine seeing everything as if it were a flip book and the only way for the images to be clear is to hold your head in a certain position. His brain then takes those images and smooths them out. So he takes longer sometimes when concentrating on things.” — Lara Young

Accredited program for PA training was held in Smederevo from July 1st until July 3rd. There were 10 attendants and all of them passed final exam.

The next training will be in Novi Sad at the end of July. 

Within the project Balkan independent network of DPOs CIL Serbia organized a series of sectoral round tables – social protection, health care, education, employment and accessibility for people with disabilities. Round tables were held in Becej, on 15 and 16 June 2015, and attended by representatives of 18 CPOs, network members, with more than 40 participants. 

The next two days, 17/18. June, CILS organised two workshops on advocacy and media topics, which were recognised as important for the development of DPOs capacities.

Kathleen Downes

When your child is first diagnosed with a disability, I imagine it’s confusing. There are lots of signs and arrows. Lots of opinions. Lots of doctors. Lots of gadgets. Lots of people who think they know the next “right thing.” And somewhere in there, you’re trying to do the right thing. It’s certainly not a perfect science, and navigating can seem maze-like, impossible. But one of the easiest and best things you can do for your child is talk to other people with disabilities who have been living this way for years. They, not the doctors, are the real experts and know not only the challenges but also the joys of living with a disability. With them come not only a trove of advice and resources but also a community I think is pretty dang cool. When you realize that, it all gets a lot less scary because if there are many signs and arrows, at least it is more fun when you have people to follow them with you… and laugh with you when you make a wrong turn or forget the meaning of one of the hundreds of acronyms that become part of your life with a disability.

I’m a 22-year-old with cerebral palsy, and one of my favorite things to do is to show those parents — who are confused, scared and lost in the face of this new diagnosis — that they will be OK. That I live a good life in spite of and because of my disability. Their children will too if given the chance.

A lot of you are probably wondering what things in my life have given me opportunities and enabled me to thrive. My answer may surprise you. One of the best things in my life, something that’s allowed me to experience the world fully with a disability, is my wheelchair. Yep. You read that right. In the early days of being a parent of a child with a disability, everything in our culture tells you the wheelchair is The Enemy. Even well-meaning doctors and therapists tend to talk about it in terms of “confinement” and, even though it’s fairly obvious I’m not tied to my seat, the term “wheelchair-bound” is still very much in fashion (usually paired with a stick figure in a wheelchair designed to look mildly to moderately unhappy). You’re taught to be afraid of the wheelchair, and that’s not your fault.

Everywhere we look in society, we’re bombarded with images of wheelchairs as things that hold people back. Your fears are just a product of what you’ve been told. Well, I’m telling you to forget what you’ve been told. I’ve had a wheelchair all of my life, and it’s done anything but confine me. It’s my freedom to move and to determine where I’m going next. It’s allowed me to zip around a college campus on my own, to go shopping, to go to museums and to decide where I’d like to be rather than let someone else decide for me.

Seeing a wheelchair as mobility and freedom instead of a loss takes a little time for some people. The transition from a stroller to a wheelchair or from walking to a wheelchair is one of the first formal acknowledgments that your child is “different.” Most little kids ride in strollers or walk beside their parents. The day your child rides in a wheelchair is the day he or she is “different” in a real, concrete way. Their difference is no longer hazy or hypothetical. But embracing the wheelchair as part of life, as something treated like legs instead of The Monster, is one of the best things you can ever do. Please don’t be afraid of something that’s given me a chance to move along in the world, something so infused with the essence of my being. I don’t know a life without it, and my alternative, given my weak muscles, would be not moving at all. My chair is covered with buttons featuring snarky phrases, fun fur, pipe cleaners from camp crafts and trinkets from various summer trips. When I ride in it, I’m not confined. When I ride in it, I’m free. Free and rolling forward.

In the beginning, well-meaning practitioners might talk as though walking is The Golden Ticket. The ultimate prize. The mark of “overcoming.” Some of them will even pressure you to make your kid walk and stand at all costs because, in their eyes, the wheelchair is defeat. But steps do not make one a whole person. The ability to stand and walk is not a mark of character, and if your child does need a wheelchair, you have not failed. You’ve simply given them a different way to get around. Walking isn’t bad either. I still use my walker for short periods of exercise, and I’m glad I have the option to stand sometimes. The point of this post is not to vilify walking or imply that exercise is unimportant but rather to take away some of the shame and implied “giving up” associated with wheelchairs.

Just because I sat down doesn’t mean I gave up.

My wheelchair has given me the option to do things I never could on my walker. I can cruise around campus without worrying about getting knocked over or losing my balance. I can keep up with people and stay beside them rather than lagging behind. I can use my hands without the fear of falling, and I can go places on my own. I don’t need constant supervision. I don’t have to feel exhausted all the time. I can use my energy to go to school, spend time with my friends and work — rather than spending every last ounce of my energy simply trying to be upright. That doesn’t sound confining to me.

So please don’t be sad about your child’s wheelchair. Be happy that he or she has a way to get around. Get excited about helping him or her pick the color, and don’t be afraid. Because there are spokes to be decorated, buttons to be purchased and a kid ready to be set free. Help your children to be proud and to understand that wheelchairs are nothing to “overcome.”

Attitudes, prejudice and assumptions that deny them equality are the real barriers to overcome.

To my fellow “wheelies” destined to enjoy the seated view: Riding in a wheelchair six inches below the average eye level will not be easy. There are days when people will judge you or even think they know the value of your life based on what they believe a wheelchair represents. But none of that matters as long as you know the truth. Those people are the ones who live in confinement because they’ve allowed themselves to overlook your beauty.

Ask yourself: Who is truly “bound?”

The answer will not be you.

The Mighty stories

Elise Free

A Letter to My Daughter’s Healthcare Team:

Dear Doctor,

To you, Addie is a patient. But she is my baby. You don’t know this, but she has spent the last nine years enduring medical procedures, appointments and hospitalizations. When she sees you, all of those memories come with her. Your white coat is a symbol of blood draws, x-rays, pokes and prods. Please don’t take it personally if she gives you the stink-eye. I’m sure without the white coat, she’d love you.

Dear Nurse,

When I ask question after question about a medication or procedure, it is not because I’m a pain-in-the-butt mom, it is because I’m exhausted and if I don’t write everything down, in 10 minutes that knowledge will have slipped into the black hole of pharmaceutical names, insurance info and commercial jingles from the 1980s. Please be patient with me. I don’t want to mess this up. A little life is at stake.

Dear Phlebotomist,

The reason Addie’s screaming and holding onto me before her blood draw is not because she’s a bratty 9-year-old who can’t handle a little pain.It’s because during the last draw, the nurse couldn’t find the vein and after both arms, three veins and being held down by aides, this is what she remembers as you come at her with a needle.You are just an accumulation. Please don’t take it personally.Your eye rolls and sighs, I understand. I do. I would feel the same way if I didn’t live it, if this were just another screaming kid of hundreds. Please try to put yourself in her little shoes. They are size 4 and a half. It may be a tight squeeze.

Dear Pediatrician on-call,

When I phone on a Friday at 5:01 p.m. it is not because I waited until the last minute; it is because my kiddo’s fever only spikes at closing time. She was born on a full moon when all hospital beds were full and almost delivered in the hallway. It’s just how we roll. I apologize. I would have loved the birthing suite and some pain meds.

Dear Pharmacist,

When we call in a prescription for a medication we’ve already run out of, it is not because I want to create an emergency for you. It is because this medication is one of 20, from four different specialized pharmacies and sometimes I cannot keep it all together. And if I am crabby and panicked, it is not because I’m unappreciative of your hard work; it is because I am mad at myself for not being the mom I would like to be. Please forgive me.

Dear Pulmonologist, Endocrinologist and Respiratory Therapist,

When we receive bad news from a blood test or culture, I realize you have already given this news to 10 other people before 9 a.m. But it means our life changes from this point on. We have come this far, learned this much and you are giving us new information. You are saying, here is another chapter in this lengthy book. Please study, memorize and perfect this. Sometimes it feels like too much. Yes they’re only lab results, but to us, they’re life results.

Dear Staff,

If I could tell you one thing, to newbies and old hats and everyone in between, it is this:

Please just listen.Y

ou have the answers, but sometimes they are given before you know the question.

Just listen. I

 am not challenging you. But I know my kid. We live this life, we wake up to it and go to bed with it. This disease is like another child in our family. It’s ours. We birthed it, we feed it, we care for it.I have not endured 12 years of medical school and residencies, but I have paid attention to every breath and heartbeat, to each slight fluctuation—knowing like a sixth sense that warm breeze before the storm. Like memorizing the rhythm of a song, you don’t need to be a composer to know when the melody is off-key.

Dear Hospital,

After a year of chronic stomach pain, and no relief, I called you for the hundredth time. A Gastroenterologist new to the hospital returned my call. I was exhausted from medications not helping and begged for answers. Her response left me speechless.“You know your daughter. Tell me what to do.”

At first, I was terrified. What do you mean, tell you what to do? Aren’t you the doctor? I don’t want this power. Here, take it back!This doctor explained she was also a mother. She asked me what I felt in my gut. I ignored my impulse to make a pun (GI, gut, ha!), mustered up my courage and said, “I want her admitted today. And I don’t want to go home until she’s better.”

And that’s what we did.

Two days letter, she was better. And we went home.

This doctor not only listened, but she trusted me. She knew about the course not taught in med school or learned in residency. It is the quiet pause of a song, a flutter of a heartbeat, a mother’s intuition. Just listen and you can hear it.

Let’s listen together.