Mainstreaming disAbility has been there since the UN first started the UN Enable movement and Maldives has never touched on implementing it.

Under this year’s main theme of IDPD 2011, “Together for a better world for all: Including persons with disAbilites in development”, are some sub-themes which are:

1. Mainstreaming disAbility: including a disAbility perspective in all development processes (more)
2. Gender: including women and girls with disAbilities in development (more)
3. Including children and youth with disAbilities in development (more)
4. Accessibility: removing barriers and promoting disAbility-inclusive development (more)
5. Promoting data collection and statistics on disAbility (more)

When we talk about Mainstreaming disAbility in the development agenda of our country, there are lots of important aspects we have to consider to even acheive the Millenium Developmental Goals.

In order for a person using a wheelchair to access decent work, the person needs to be able to physically move in and out of his or her home; needs to be able to access the public space and transportation; and needs to be able to access the work facilities, in terms of both the built environment and its information and communications systems.

Different entities need to ensure that their respective spheres of responsibility provide the necessary opportunities and access to persons with disAbilities, on an equal basis with others. If any one element of the network fails in this obligation, persons are not able to reap the benefit from the other elements. In order for them to be integrated and included in the development agenda, a comprehensive and holistic approach is required. Mainstreaming disAbility in development or disAbility-inclusive development is a useful and necessary strategy.

There is a strong bidirectional link between poverty and disAbility. Poverty may cause disAbility through malnutrition, poor healthcare, and dangerous living conditions. Case studies in developing countries show that higher disAbility rates are associated with higher rates of illiteracy, poor nutritional status, lower immunization coverage, lower birth weight, higher rates of unemployment and underemployment, and lower occupational mobility. disAbility can cause poverty by preventing the full participation of persons with disAbilities in the economic and social life of their communities, especially if the appropriate supports and accommodations are not available.

The Millennium Development Goals (MDGs) established a unifying set of developmental objectives for the global community which includes our little but vibrant Maldives. Bringing together United Nations agencies, governments and civil society around eight key development issues, the MDGs foster collaborative action to reduce poverty, improve health and address educational and environmental concerns around the world’s most pressing development problems. The MDGs are specifically designed to address the needs of the world’s poorest citizens and the world’s most marginalized populations.

The high numbers of persons with disAbilities who are disproportionately represented among the world’s most marginalized groups have a profound significance with respect to the achievement of the MDGs, which thus far seems to have gone largely unnoticed in the international discourse on the Goals. Eighty per cent of persons with disAbilities live in developing countries, and the failure to include and integrate them in all development activities will mean failure to achieve the MDGs.

Furthermore, given the wide scope of contexts, actors and activities required to fully include persons with disAbilities in the development agenda, it may be helpful to consider the process in the light of the “no-gap policy”. The no-gap policy is a concept which illustrates that no entity, whether it be part of the United Nations system, a Government ministry or a non-governmental organization (NGO), can achieve the goal of equality for persons with disAbilities on its own. Rather, an interconnected network of actors is required to reach this goal.

Increased access to data and statistics will increase the ability to ensure that programmes are targeting the areas of greatest need. The development and dissemination of such data, as well as knowledge including good practices, lessons learned, and sources of expertise, will assist all actors in the implementation of the Convention on the Rights of Persons with disAbilities at the local, national and international levels. The integral involvement of civil society, including of organizations of persons with disAbilities, in national and international mechanisms is an essential ingredient in effectively guiding the development agenda towards integrating and including persons with disAbilities. Efforts to incorporate and include persons with disAbilities into the development activities have been gaining momentum over the past several decades.

The Convention on the Rights of Persons with disAbilities offers an ideal opportunity to consolidate disAbility-related activities, and to develop policies and structures that ensure that persons with disAbilities are mainstreamed within the United Nations system. Lessons learned from gender and HIV/AIDS mainstreaming can provide valuable guidance, and there are an increasing number of tools to inform and guide this process, which when coupled with strong political will can lead to significant positive gains.

Furthermore, the Convention on the Rights of Persons with disAbilities also provides the opportunity for human rights and development actors to actively combine and integrate these two areas. New and innovative thinking and collaboration are required to utilize the Convention so as to bring the maximum benefit to persons with disAbilities and society. It is both a human rights and a development instrument that elucidates how all categories of rights apply to persons with disAbilities, and identifies practical measures to create development programmes that are inclusive of, and accessible to, persons with disAbilities.

Resources and Documents

Selected examples: best practices at the international, regional, subregional and national levels for including persons with disabilities in development efforts (Updated: 8 July 2011)

“Mainstreaming disability in the development agenda” Note by the Secretariat to the Forty-sixth session of the Commission for Social Development to the, 6-15 February 2008 (E/CN.5/2008/6)

Panel Discussion: Mainstreaming Disability in the Development Agenda, United Nations Headquarters, 12 February 2008

Disability Dimension in Development Action: Manual on Inclusive Planning United Nations in collaboration with the National Research and Development Centre for Welfare and Health (STAKES) in Finland (Revised online version 2003)

Keeping the Promise: Realizing MDGs for Persons with Disabilities Towards 2015 and Beyond: Report of the Secretary-General (A/65/173)

Priority Themes: Mainstreaming disability in the development agenda

Photo Credit: Hani Amir http://www.flickr.com/photos/haniamir/3972177053/

*1 Suggested by Latheef

Please note that these terminologies are not official. These are the terminologies that I feel is appropriate in terms of usage. There is no work done on terminology right now and different official documents contain different terms for these disAbilities.

Rosemarie (Rose) Siggins The Woman with Half a Body – by Rosemarie (Rose) Siggins

Rosemarie Homan was born with a rare genetic disorder known as ‘Sacral Agenesis’, I had severely deformed legs with feet pointing in opposite directions.

There was no feeling in my legs and, as a child; I was in danger of harming myself. When I was two years old my mother and father, after consulting with many doctors at the Children’s Hospital, decided that the best course of action was to have my legs amputated. This insightful decision by my parents allowed me to lead a fairly normal childhood.

Rose at 10

Rose became a celebrity at the age of ten. The local TV station filmed the incredible life of the girl whose useless legs had been removed to increase her mobility. But, away from the cameras, the girl with half a body found herself to be a target. She recounts “The kids were mean to me, just because they didn’t know me or were scared of me, so most of them would resort to name calling”. [read link]

I grew up, with my mentally challenged brother, Jim Homan, in Pueblo, Colorado. I believe my parents made the right decision, about the amputation, because I could not imagine being confined to a wheelchair. My mother and father were very supportive and strong in helping me to be so strong, confidant, and independent. I have so much more freedom walking on my arms; to me it is just like having legs. I describe my physical condition in my own way “ If you take a Barbie doll and remove her legs, the region you are left with is what I have. I have all the female working organs, the only reason I sit shorter or more compact, as people say, is because I’m missing four sections of my lower spinal column”.

Rose's passion for muscle cars

I have a great passion for muscle cars, if it as a V-8 engine or a lot of horsepower, then you have my attention. I used to enjoy playing in my dad’s toolbox at the age of 3 years old and it never stopped. When I was sixteen, my parents helped me purchase my first car, a 1974 Chevy Camaro with a 350 engine. My dad and I adapted a hand control unit so I could drive the car myself.

Left Right

Family

Rose's prosthetic limbs. She refused and rebelled to wear it to school on 8th grade

Going to public school was somewhat of a nightmare for me. During the late 70’s and 80’s, school administrators were trying to mainstream those of us who were disabled in to classes with normal students. So administrators insisted I use my prosthetic limbs while I was in school. They wanted me to look like everyone else or close to it. In about 8th grade, I rebelled and refused to wear my, what I called my ‘fake legs’ to school. So I chose my way, how I wanted to get around was using my skateboard. After a few meeting with the school board they finally agreed to support my decision. My parents backed me up on the idea and helped me voice my opinion.

I met my husband in 1997, Dave Siggins, who worked in an auto parts store. We always flirted on the phone when I would call to order parts. One day I had to go to physically go to the auto parts store to handle a problem that came up. I rolled in on my board and started talking to this guy at the counter. I explained my problem and he was helping me handle it. I thought to myself, his voice sounds so familiar. He doesn’t look familiar. He was totally cool guy. He came from around the counter and knelt on one knee and talked to me eye to eye about my situation. He never looked at me in that weird way, most people stare or their mind is wondering and trying to figure out what happened to me. Dave helped me solved my problem and then asked me if I would like to go have a drink after work. I told him sure.

Rose at her wedding

Our relationship blossomed from there we married in 1999. I had the white wedding with my little dress; I walked down the aisle with my dad carrying my bouquet of flowers. I sat on a chair, while Dave remained standing. We said our vows and kissed. My father cried the entire time of happiness for me. My mother who is the strong one sat with a big smile on her face the entire time.

Dave and I always wanted to have kids. I never wanted to go ask a physician because I was afraid the answer would be no. My mom was very religious and said, “If it was meant to be God would allow it to happen”. Well, God was on our side and we discovered I was pregnant. My pregnancy was extraordinary and groundbreaking, no one with Sacral Agenesis had ever carried a child or given birth. Many doctors were concerned for my health; not having any thing to reference from in the past, many were very discouraging. Some talked of abortion, others were unsure of me as a patient. I finally was referred to a doctor in Colorado Springs, 30 miles north of Pueblo. Dr Wolfson, a neonatal genetics specialist, was willing to take the on my pregnancy. He first spoke to us about all of the dangers. He said, “You and Dave are committing to a pregnancy and Rose could be basically, laying her life on the line because nobody knows what this means, no one has lived this experience before.” He then said, “Congratulations”! We did several ultrasounds and saw the tiny baby inside me. He was mentioning many parts of the fetus. Most I recognized only one I did not. He said, “This is the Femur”. I immediately responded what is it and can we fix it. He said it is a leg bone and the baby has two. I was relieved to know he had both legs and I asked the doctor are they working normal. He said the baby is kicking away. I was so taken aback by knowing my child could be normal. I was willing to except any child from God normal or not.

Dr. Wolfson’s main concern was as the uterus expands it may compromise your lungs and cause problems with your breathing. I was monitored more closely with having ultra sounds every month for the first five, and then every two weeks until 35 weeks. We then went every week or other day until we reached 38 weeks. I had no problems during my first pregnancy. All that was feared never happened. I placed my life in Gods hands and believed he would help me. On January 6th 1999 Luke Ryan Siggins was born.

On January 6th 1999 Luke Ryan Siggins was born

My parents became grandparents and they were enjoying every minute of it. But, tragedy struck my family, after celebrating Luke’s 3rd birthday. My mother was diagnosed with terminal cancer. My mom held our family together, she took care of my dad and brother, provided emotional support and kept us together as a family. Her death had a disastrous effect on everyone especially me. I knew with her gone I would have to step up and fill her shoes. These are big shoes to fill especially when you have never worn shoes. I did step up and took on the responsibility of caring for my dad who had Alzheimer’s and Dementia.

Rose's brother Jim

My brother is mentally challenged, his mental age is about 8 years old, did not understand why mom was taken to heaven. I knew Jim and my dad would not be able to manage a house or do the everyday takes expected of them. So, Dave and I with Luke moved into my very small childhood home. Our move was met with a lot of resistance from Jim; he would leave the house, walk to the local store and tell the clerk he was being abused. The clerk would call the local police for him, and he would then tell them many stories of neglect, abuse and torture. The police with social services would then arrive in a five-alarm mode and question Dave, my father and myself. We would explain to the authorities Jim was having difficulties dealing with the fact his mom had died. After several months, of being, questioned and being threatened our son would be taken from us we found Jim some help. He now is enrolled in Blue Sky’s a wonderful program, which helps him, become more independent and supports him with counseling and a loving environment to live in.

After Jim’s departure into Blue Sky’s our family life became slightly normal. Luke was in school and enjoying as much grandpa time as grandpa could handle. Our everyday tasks did not seem like tasks but just how our life became. A few years had past and we found out I was pregnant with our second child.

On January 11th 2006 Shelby Cecilia Siggins was born

My second pregnancy was not as easy as the first. I would have to say it was one of the most difficult tasks I ever encountered. We had many late night hospital stays because I would start to bleed and doctors did not know why. It was hard at times to breath because I felt my chest was being restricted. I had pain in my abdomen where my c-section was located. Doctors were worried my uterus could rupture killing the baby and myself. Every thing was going wrong for me and my problem was I could not control it. Most of my life if I had pain or discomfort I knew what it was and how to get rid of it. But, now I had this little person inside of me causing me pain and discomfort. After a few months of being pregnant I was placed on bed rest. I had to be in bed all day and all night long, this drove me stir crazy. Just to sit and think all day about everything that has gone wrong. To watch my husband cook and clean take care of Luke and my dad and also go to school. I had to really find strength from within myself to survive day to day. I did look to God and wondered did I bite off more than I could chew. Would this second pregnancy be it for my life? I had to stop thinking like this and find strength not for me but for my baby and Luke. The day finally arrived for me to have my daughter. Dr. Weary, my Ob-GYN, for both pregnancies, had a hard time cutting into the old c-section scar and tearing through to get to the baby. The baby was under anesthesia for about 30 minutes. When they reached her she was life less, they worked on her for several minutes, which seemed like a lifetime. After several attempts to bag her, with no success, she finally took her first breath of air and you could hear her wailing of a cry. Once the baby was fine, doctors turned to me and found most of my problems, during my pregnancy. My gall bladder and appendix had to come out. After hearing I had faulty organs I was relieved to know it was not the pregnancy that caused me my problems but my own organs. On January 11th 2006 Shelby Cecilia Siggins was born.

Rose with Shelby

After five days in the hospital, I returned home and tried desperately to get life back to normal. My c-section was not healing and the possibilities of it opening were very high. So I had to return to bed rest for a few weeks I started to feel very depressed about life. I thought back to when Luke was born I had no trouble bouncing back into everyday tasks. My baby laid and cried a few feet away from me and I could not get up to help her comfort her, because the fear of my insides falling out. One night I had a dream of my mother, she was upset with me because I just lay their doing nothing. I explained to her I could not because I was scared. She told me this is not how I raised you, I expect more from you. You need to get up and out of the bed and start living life, take care of your responsibilities. I woke up, I realized I was not dead and I did have a lot to do. Moving very slowly and with caution I fed my daughter and changed her. I held her and rocked her and loved her. I realized I came close to death, but it was worth it. I would do it again if I had to because I could not live life without my Shelby. She has allowed me to put life into perspective and know that I am not superhuman and I do have limitations. Without her wanting me, needing me and crying for me, I may not have come back.

Rose's dad

Months pass and I have regained my strength and feel I have taken control of my life. My dad spends quality time with both of his grandchildren. I know his health is failing with every passing year. I decide my dad needs to go back to Nebraska, his home state, and visit is long lost brother. We packed up the children and my dad to drive the 10 hours to meet his brother. We had a great time meeting family and his long lost friends. Jack, his brother, along with his wife planned a very nice reunion barbeque when we arrived. My dad saw friends and family he hadn’t seen in forever. He enjoyed seeing the Nebraska country knowing in his heart it would be his last time.

A year later my dad was becoming tired more often and not wanting to socialize as much with the family. We found out he had Leukemia and it was in an advance stage. I made the decision to have my dad leave the hospital and come home immediately. He joined my mom in heaven on December 11th 2007.

With our loss of grandpa heavy in our hearts, Dave and I must move forward. I feel my life was placed on hold taking care of my dad; understand I would never trade in those years for anything. I must continue my life where it ended, when I came home to take care of my dad and brother. So, now my biggest question to myself is: What do I want to be now that I am grown up?

You can find her on facebook at: http://www.facebook.com/pages/Rose-Siggins/420734870360

Rose Siggins on Myspace: http://www.myspace.com/rosesiggins

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Pt 2

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World Autism Awareness Day is on the 1st April and this means the ‘Light it up blue’ campaign.

On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world – including the Empire State Building in New York City and the CN Tower in Toronto, Canada – will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2. More than 500 structures and iconic buildings throughout the world, including the Sydney opera house, Federation Square Melbourne, the Storey Bridge Brisbane, the Empire State Building New York, Torre Agbar Spain, the Kingdom Tower Saudi Arabia will be lit up in bright blue lights.

Autism Awareness, an Australian agency, has a brand new website which is a fantastic resource for those looking for practical help and information on autism spectrum disorder.

This is what they have to say:

You can show your support by lighting your own blue light bulb at www.autismawareness.com.au

You could also light up your own house or place of work with blue lightbulbs!

Watch two of your favourite movies

ON THE BIG SCREEN AT OLYMPUS for just 30RF each

Enjoy while you donate for the cause of Autism

Tickets available at H.Alihuras (in front of Ameer Ahmed School) and also Ma. Eureka

For enquiries call +960 7919033

World Autism Awareness Day is coming up on Saturday, April 2, and it’s going to light up the world in blue! Light It Up Blue is an easy way to raise awareness about autism and be part of a worldwide movement to show your support for the autism community.

Sign the pledge to raise autism awareness:

http://action.autismspeaks.org/share-blue

Participating in Light It Up Blue is simple — just sign the pledge to do things like wear blue clothing, feature the Light It Up Blue logo on your Facebook profile, or write a blog posts about the event.

http://action.autismspeaks.org/share-blue

Thanks for helping me light it up blue this year!

My post today is similar to others I’ve seen on the blogsphere, but I thought it was important to share and I hope that you add a few of your own to this list as well as share the link on your facebook page and post it on your personal blogs. Not everyone knows the right things to say and it is up to us to educate them. It just may help some of your friends and family members to understand your child better and to open the lines of communication.

I think most of you will agree that people who say these things are not mean spirited people, but good people who simply don’t understand that what they are saying or not saying can sometimes be hurtful.

Each of our children may have a different diagnosis and some may relate while others may not, but here are just a few things that you should NOT say to parents or family members who have people in their lives with special needs. Feel free to add what you think others should not say in the comment section.

What NOT to say…

• God only gives us what we can handle; He must think you two are special parents
• Using the word “Autistics” to describe people on the spectrum.
• Remember, you have to take care of yourself, so you can take care of them.
• He’ll speak when he’s ready to.
• When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”
• They’ll EAT when they’re ready. They’re not going to starve to death.
• You are so much stronger than me… I don’t know how you do it
• Pointing out that my non-walker shouldn’t be in a stroller.
• They just need discipline.
• You two are amazing for adopting two special-needs children. They are SO LUCKY.”
• For a child that has tics, saying, “Do you think she is doing it for attention?”
• Anything that implies that sensory issues are not real or that we’re playing into their “fear.”
• When people say they are sorry or offer condolences for a child with disabilities.
• What’s wrong with her?
• Don’t worry she’ll catch up.
• She’ll grow out of it.
• Is your other son/daughter “normal”? or “Are your other kids ok?
• You are so much stronger than me and/or I don’t know how you do it.

SAY THIS! Instead …

• I don’t know what to say to you, but I love you.
• How are you doing? (and actually listen to the answer)
• “How Can I Help?”
• I just wanted you to know I was thinking about you.
• I just made an extra dinner when I was cooking for us, can I drop it by now?
• I know you had an appointment yesterday, how did it go?
• I’m on my way to the store, want me to grab you some milk or bread?

Always keep in mind that we would like people to perceive our kids as people who have feelings, and when you see our kids in a wheelchair or maybe with leg braces, please do not pull your curious child away from ours. By doing that you are sending the wrong message to both children. You are indirectly telling your child that my child is someone to fear. Thus making it much more difficult for acceptance.

Posted by Janet Lee Harrold at ExceptionalFamilyTV

Last month, we celebrated the International Day for Persons with disAbilities(PwD’s) and most of you might have seen or heard about it. I’m intentionally am blogging about this, late to highlight the point that it is not just one day in a year, we should be observing and creating awareness for disAbilities.

We should, each and everyday, promote the understanding of disAbility issues & mobilize support for the Dignity. Rights & Wellbeing of these people. And each day, we shall seek to increase awareness of gains to be derived from the integration of PwD’s in every aspect of Social, Economic and Cultural life in the community.

Also believe me, persons with a disAbilities does not need your Sympathy, what they really need is your Empathy. The need to know that there are people within us who cares for them.

I’d like to thank a lot of people today; Fans, Members, Friends and Relatives who have been with us, supporting this little but important awareness idea on Facebook about a child among many children with disAbilities in Maldives. There are approximately 88380 users in facebook from Maldives and 2130(20110104) of them loves children with disAbilities(about 2.5% of FB users). I’d like to highlight again, create awareness among kids in your family, as families are the community and kids are the future.

Thank you
M.Yasiph
Yafaau’s Daddy

In today’s society we find that how people talk about disability is widely varied. Many people wonder what is appropriate and what is not when talking about disability. It is important that as parents we use people first language and help our children to understand and adapt people first language.

What is people first language?

People first language is focusing on the person first and the disability last. The following are some guidelines for talking about disability and developing people first language:

• Do not refer to a person’s disability unless it is relevant.
• Use “disability” rather than “handicap” to refer to a person’s disability. It is okay to say that a person is handicapped by obstacles, such as architectural barriers or the attitudes or ignorant or insensitive people. Never use “cripple/crippled” in any reference of disability
• · When referring to a person’s disability, try to use “people first” language. In other words, when necessary, it is better to say “person with a disability” rather than “a disabled person” in the first reference. Since “disabled” is an adjective, it is important to avoid ridiculous – and improper – constructions such as “disabled group” or “disabled transportation.” Instead, build phrases using the word “disability.” For example, “disability activist,” or “disability community,” are correct and not contradictions to the “people first” ideas.
• Avoid referring to people with disabilities as “the disabled, the blind, the epileptics, the retarded, a quadriplegic,” etc. Descriptive terms should be used as adjectives, not as nouns.
• Avoid negative or sensational descriptions of a person’s disability. Don’t say “suffers from,” “a victim of,” or “afflicted with.” Don’t refer to people with disabilities as “patients” unless they are receiving treatment in a medical facility. Never say “invalid.” These portrayals elicit unwanted sympathy, or worse, pity toward individuals with disabilities. Respect and acceptance is what people with disabilities would rather have.
• Don’t portray people with disabilities as overly courageous, brave, special, or superhuman. This implies that it is unusual for people with disabilities to have talents or skills.
• Don’t use “normal” to describe people who don’t have disabilities. It is better to say “people without disabilities” or “typical,” if necessary to make comparisons.
• Never say “wheelchair-bound” or “confined to a wheelchair.” People who use mobility or adaptive equipment are, if anything, afforded freedom and access that otherwise would be denied them.
• Never assume that a person with a communication disorder (speech impediment, hearing loss, motor impairment) also has a cognitive disability, such as mental retardation. On the other hand, people with mental retardation often speak well.

The above bullet points was gathered from the Memphis Center on Independent Living http://www.mcil.org/mcil/mcil/talking.htm

It is important that we think about how we talk about disabilities and examine whether or not we are using people first language. As we develop this way of thinking in ourselves we will be better equipped to help our children develop these habits.

What are your thoughts about this?