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/

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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

I was going through the Telecom Policy 2006 – 2010 and its objective to Establish reasonable communication means for People with disAbilities under Infrastructure Development caught my attention. It says;

Objective

2.7: Establish reasonable communication means for people with special needs (PWD’s)

Action

2.7.1 Study the telecominication needs of the people with special needs.

2.7.2 Provide awareness on the available technologies to the people.

2.7.3 Monitor the use of such technologies by PWDs and success of the program.

My point in highlighting this is, our Internet Service Providers and Mobile Operators should rather than use up their Corporate Social Responsibility(CSR) on expensive football tournament sponsorships, should spend on important “social” objectives like the one in their existing policies. I hope they take this seriously.

A teacher conducting lessons at a special needs school. Credit: Haveeru

In less than a month from the article at Yafaau’s blog about the difference in the allowance for Persons with disAbilities, Department of Gender and Family takes action and requests all Visually impaired persons to register themselves in the Registry for PwD’s. This is a good initiative by the health ministry. I think, rather than registering themselves, Dept. of Gender should add them to the registry with verification. And there should not be a deadline as the disability bill does not have any deadlines mentioned in it! Any person with any disAbility could register and claim the allowance anytime. Here’s the article about it on Haveeru news service with my edits italicized.

Haveeru.com.mv article

MALE, May 2 (HNS) – Given the decision by the government to stop giving a specific allowance to the blind [visually impaired persons] every month an opportunity has been provided for them to register themselves in the Registry for People with Disabilities.

The Director General of the Gender Department at the Health Ministry, Fathmath Yumna, said that previously the government had been giving out an allowance of Rf. 2000 individually to specific disability groups[only the visually impaired], but since deciding to pay to a generalized disability group, more people have registered themselves. However, a lot of people with sight disabilities [visually impairment] still have not registered, so the deadline has been extended until May 10.

The idea for a special registry for disabled people [with disabilities] stemmed from a law, which seeks to protect the rights of the disabled [persons with disabilities], which came into effect in April. Thus those who do not register themselves by May 10 will not be getting the allowance issued by the Finance Ministry.[<- This statement is not true, every PwD will get the allowance]

The department states that they have received around 5,000 applications so far, out of which 1,500 forms have been cleared and sent to the National Social Protection Agency (NSPA).

I was called and got involved in this discussion by Imaadhudheen School Special Educational Needs or SEN class parents which led to getting an appointment with the Minister of Education to highlight the issues and concerns.

I jotted down some points which I feel was important to address in such a meeting which included the seniors of the Ministry. Here’s the summary for all the parents who participated and requested it be available at Yafaau’s blog.

• Education for children with disAbilities very limited
• Education is not conducted in inclusive classrooms
• Is there a standard curriculum followed except Jamaaludheen School?
• Secondary Education for Children with disAbilities.
• Vocational training and planned transition from school to work… whats being done? Edu mandate only covers upto 18+! what next?
• Lack of employment services
• Early detection;
  • What’s being done? <3yrs?
  • Reporting mechanisms?
  • Challenges (link to healthcare)
• Sign language for Parents, Teachers and Police?
• Easy access of information on services from the edu ministry to be available in all islands…
• Strategic Action Plan 2009-2013 (MDP) states that;

“Increase and expand educational opportunities for children with special needs including the gifted and talented.” – 8th policy of education.

• SEN Advisory Committee meetings stopped… when resuming?
• Male/Female attendants needed for SEN students when using toilet.

I have Included the ‘Pencasts’ of the meeting so here’s the link

(http://www.livescribe.com/cgi-bin/WebObjects/LDApp.woa/wa/MLSOverviewPage?sid=qXLRvnfGtkTG)

You will need special permission to view this pencast

I just stumbled upon the website of the Maldives healthcare exhibition. I think it is a good initiative to explore the possibilities in expanding your options in healthcare. It is to be held on 17th to 19th March 2011. Here’s what their website say:

“The major health problems and key issues faced by the Maldivian health sector is a result of the inherent structural problems faced by the country. According to the World Health Organization (WHO), geographical severity of the country, coupled with the scattered population, leads to severe diseconomies of scale in the provision of healthcare services.

Lack of adequately-trained personnel, shortages in professionally and technically skilled health manpower, difficulty to access safe drinking water and proper sanitation, malnutrition among children, increasing cases of anaemia, maternal nutrition deficiencies, food security and food safety, vector-borne diseases are some of burning issues that the Maldivian Government is facing. The health sector is also changing rapidly and more advanced treatment systems are now available in the industry. Therefore it is important to educate the general public of such advanced treatments, new innovations, and best hospital services etc, to live a healthier lifestyle.

Maldives International Healthcare Exhibition will play a vital role in supporting the national objectives of the Maldivian Government on the above burning issues by encouraging the exposure of new trends, technologies and also in educating and creating awareness amongst the general public to face new challenges in the sphere of personal health.

The Maldives International Healthcare Exhibition is planned to be held in March 2011 with the participation of many local and international medical and healthcare service providers.”

Visit MaldivesHealthcare.com

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