In a recent article published by the Huffington Post, a disabled woman wrote: “disability transcends race, ethnicity, religion, socioeconomic status, sexual orientation, and gender identity”. In other words, people with disabilities are a very diverse group of people.
Eddie Ndopu a 25-year-old black, queer-feminist, disability rights activist from Johannesburg is making history in a big way. He was raised by a single mother who fled apartheid South Africa to self-imposed exile in Namibia. At the age of two, Ndopu was diagnosed with spinal muscular atrophy and given until the age of five to survive.
Since then Ndopu has led an extraordinary life and career. He has held key positions such as Head of Amnesty International’s Youth Engagement Work for Africa, a summa cum laude graduate of Carleton University in Canada, where he served as a research analyst at the World Economic forum.
He is a champion of disability activism or as Ndopu puts it “ I’m the guy on wheels who refuses to rest until every single disabled person in the world until every single beautifully black and brown disabled soul gets a fighting chance at living their best life”.
In his video “In His Own Words” what strikes me about the video is how he challenges the audience to think about their understanding of disability. It’s one of the most inspiring videos I have watched. I hope you enjoy it.
Nobody expected Donald Trump to win the election but now with Trump sitting in the Oval office what can disabled people expect? Like many other comments Trump has made during his election marginalized groups, including disabled people, will be watching carefully in 2017.
Although it is impossible to predict what the Trump administration will govern, his campaign platform and the Republican's priorities do not reassure disabled people and their families who rely on support from the Care Act and Medicaid.
Disabled rights activists have voiced concerns throughout his election campaign, his threats to repeal Obamacare, block granting Medicaid, reducing ADA enforcement and police accountability are just a few concerns.
Sadly, like many others, their voices have been pushed to the side and the American electorate has voted for an individual who publically mocked a reporter with the joint condition arthrogryposis. An election campaign which has been embodied by hateful messages, misogyny and discriminations will lead many people left with a sense of unease. Below are some of the points which disabled activists are most concerned about.
Repealing Obamacare Throughout his campaign, Donald Trump has repeatedly promised to repeal the Affordable Care Act, also known as "Obamacare". The Republican party has full control of both houses of Congress, meaning Trump will easily be able to fulfil his campaign promise.
However, after his meeting with Mr.Obama on Thursday he has reconsidered his calls for an all-out replacement of the Care act. In a recent interview with the Wall Street Journal, he hints at a possible compromise to keep some aspects of the 2010 law.
In his first interview with since his election earlier this week with the Wall Street Journal, the president-elect said one priority was "moving quickly on President Barack Obama initiative, which Mr.Trump said has become so unworkable and expensive you can't use it".
Trump also comments how Mr.Obama has asked Mr. Trump to reconsider his stance during their first meeting at the White House after the election. Obama's consideration seems to be heard as Donald Trump has said he favours keeping at least two provisions.
President-elect Trump said he favours keeping the prohibition against insurers denying coverage because of patients' existing conditions, and a provision that allows parents to provide years of additional coverage for children on their insurance policies. Saying "he likes those very much".
For now, it seems Trump has done a U-turn on repealing Obamacare altogether. However, the Republican party has never supported the Care act combined with his erratic and inconsistent policy decisions may lead to another rash decision. Block-Granting Medicaid
Another of Trump's election campaign promises was to ''block- grant" Medicaid or flat annual funding amount. On Trump's website, he claims that nearly "every state already offers benefits beyond what is required in the current Medicaid structure". As part of the reforms, he pledges that governments can have more autonomy over the administration of Medicaid. He claims that this gives the states more incentives "to seek out and eliminate fraud, waste and abuse to preserve our precious resources".
Currently, Medicaid functions as a flexible needes-based insurance program designed to provide health care to as many impoverished people as necessary. It is very unclear how Trump would structure his block-granting plan, his proposal was very unclear. The page entitled "Healthcare Reform to make America great again" claims the "American people have had to suffer under the incredible economic burden of the Affordable Care Act- Obamacare". The reforms rely heavily on free market principles that will restore economic freedom.
It is estimated that the proposed 'block-grant' could easily cause some 30 million Americans to lose health insurance, a significant amount of those who are people with disabilities. A healthcare system based on the principles of free the market will hit the most vulnerable. With many Americans falling further into poverty putting healthcare up for sale is not the answer to a more stable and healthy society.
Reducing ADA Enforcement and Police Accountability Disability activists have stressed concerned that the next administration could cut back on the civil rights division's resources or change its priorities. The president conducts a significant amount of disability policy through control of various regulatory agencies. The Department of Justice's (DOJ) civil rights division, for example, pursues complaints against employers, business, and other institutions for violating the Americans with Disabilities Act, the 1990 barring discrimination against Americans with disabilities.
Many organisations are sceptical Trump's political appointees to agencies like the Centers for Medicare and Medicaid Services and Department of Labor would be committed to ensuring access to benefits and suitable workplace accommodations for people with disabilities.
A Trump backed DOJ could also progress on police accountability to the detriment of people with disabilities - says David Perry, a leading writer on disability issues. As many as half of all people killed by police are disabled, according to Perry's original research for the Ruderman Family Foundation - including Eric Grabber, who suffered from asthma and heart disease. With the problematic situation of police shootings in the USA, the DOJ needs funding and an administration which will actively support their prosecutions. Therefore the DOJ's pursuit of police accountability is a disability rights issue as well.
Many activists will be waiting in anticipation for the appointee of the DOP who has yet to be named. However, if the current selection has anything to go by he will select a conservative individual who will unlikely maintain and fight for disabled peoples' rights.
Moving forward Protecting people with disabilities has traditionally been a cross-party cause in Congress. We hope this will be continued by both parties and the Republican party is able to keep Trump's regressive policies in check. In the words of Stephen W Thrasher " Hold tight to the ones you love who are sick and differently abled."
The World Health Organisation estimates that at least 81 million in Africa have some form of disability. In Nigeria alone it is estimated that 25.5 million people in Nigeria had at least one disability.
Grace Jerry is one of the 25.5 million people who have a disability. In 2002, Grace Jerry was on her way home from choir rehearsal when she was knocked down by a drunk driver and left with paralysis of the lower limbs. After the accident she says music took on a whole new dimension and now she uses music as part of her activism in Nigeria.
The Presidential Precinct Yali video blog, Grace or 'Gracie' eloquently speaks about her experience as a advocate for disability rights in a developing country.
My last blog explored how to make disabled aides in developing countries. This week's blog will focus on a NGO based in New York who adapt cardboard to make aides for disabled people.
The Adaptive Design association first started out in 1981 when Alex Truesdell, an early childhood teacher from the Perkins School for the Blind in Boston, met Erin, an infant with severe multiple disabilities. A short time after Alex's Aunt Lynn lost the use of her fingers and thumbs following a spinal cord injury. With the help of her Uncle, Alex started to adapt different types of materials to customise solutions for Erin and her Aunt Lynn.
Over the next few years, Alex set up a small workshop in her basement and made many more adaptions for children at the school. Eventually the school hired Alex fulltime to start the Assistive Device Center, a program now in its 28th year.
Image courtesy of Kristen Hastings
The mission of the Adaptive Design Association (ADA) is to ensure that people with disabilities are able to fulfil their potential in all spheres of life. ADA help adapt materials for self-care, communication, social activities, academic and vocational potential. Each person receives their own custom adaption to suit their need. The organisation also runs a full range of hands-on education, from basic introduction to apprenticeships, for people wanting to establish Adaptive Design Center's within their schools, organisations and communities across the globe.
Kristen Hastings an occupational therapist from the USA who I met in Viet Nam when she volunteered at a rehabilitation centre I was working with, took the three day course with ADA. Kristen's motivation for embarking on the course was her experience volunteering at a rehabilitation centre in Hanoi, Viet Nam. Throughout her experience Kristen worked endlessly to adapt wheelchairs by using towels, thera-bands and other materials to correctly position each child. The course run in New York offered Kristen a chance to develop new skills when she works overseas in developing countries.
Image courtesy of Kristen Hastings
The three day course includes the basics such as how to measure accurately, how to cut the cardboard using various power and hand-tools; to more complex tasks such as how to manipulate the cardboard. Kristen choose to learn how to make chair inserts as part of her final task on the last day. The chair inserts fit into a wheelchair which would position children in the most optimal position.
The course has enabled Kristen to develop sustainable solutions to rehabilitation and care in the developing world. Cardboard is a accessible material in many developing countries and with limited access to equipment designed for disabilities, engineering aides from cardboard is a lifeline for developing countries.
This simple idea of manipulating and adapting a low cost material allows more and more people with disabilities to access their world. Kristen Hastings commented 'positioning is key for so many who have a disability. With the proper supports, the body is free to focus more on eating, playing, writing etc. With increased accessibility to engage in your environment comes increased socialisation with others. With increased engagement and participation in one's environment comes increased quality of life."
By enabling a person to draw, play a musical instrument, wash their own hands or improve their communication skills to develop their potential. So often disabled peoples options are very limited due to a lack of accessibility.
Adaptive design provide great solutions for everyday uses. Although the organisation is located in New York they encourage individuals to spread the word and ideas. ADA hope to train other professionals, opening more workshops across the United States as well as other countries. By connecting more people across countries Adaptive Design is leading the way to creating greater accessibility for individuals in multiple communities across the globe.
Working overseas in a developing country is always challenging whether you are haggling for resources to build a centre to stay on budget for a project or the car breaking down in the middle of nowhere - you have to learn to think on your feet.
Whilst working in Cambodia and Vietnam I spent a vast amount of time trying to find ways of making and adapting equipment which we would be able to find so easily in the developed world. Whether I was trying to fix wheelchairs, improve the level of care the children received or attempting to make toys to help with therapy sessions, everyday was a struggle.
During the month of October I'm going to share some of my ideas, solutions, books, websites and resources to help aid workers, families and therapists from across the world. This week I’m going to focus on making toys and sensory boxes for sensory therapy.
Sensory bottles
Pinterest has been my go to place for making sensory bottles for the last two years. Although it has been filled with endless experiments of making sensory bottles in a classroom in Cambodia, the office in Vietnam and many other places! I have finally found the winning solution.
What will you will need?
Water bottle Water Glitter glue (or PVC glitter and glitter) Glitter Jewels/Sequins/Buttons etc
Super glue
How to make it:
Fill the water water bottle up to roughly ⅔ Add a bottle of glitter glue and some extra glitter Add the jewels,sequins, buttons etc Finally superglue the top so it doesn’t go everywhere!
Sensory dens
Ideally every centre will have a sensory room where the children can receive therapy or a place for them to relax. Sadly not every centre has enough space or resources to build a sensory room. In some centres we created ‘sensory dens’ which was a makeshift version! Here are some ideas which we used.
What will you need?
Material Cardboard/paper
Fairy lights Cushions Paint/colouring pencils/felt tips Art and crafts materials - glitter, sequins, material etc
How to make it:
Drape the material to make a tent like shape. Decorate the tent to the children’s need i.e including fairy lights, mobiles and sensory boxes to include for the session.
Sensory boxes
Each box can be designed to each child's or adult's need whether the box can be used to improve fine motor skills, autism or dementia there are lots of possibilities.
Autism Space sensory box:
You can adjust each box to the individual need whether you need a box based around a sense, learning tool each box can be changed!
What will you need?
Black beans or grey sand Astronauts Pebbles Planets made from bouncy balls or cut out circles from cardboard Stars (glow in the dark if you can source them)
How to make it:
Put it all in the box and create space!
Touchy feely dementia sensory box:
Boxes Bowl of cold porridge Ball of cotton wool Sponge Polystyrene balls Banana Football
How to make it:
With this box you can make a hole in each of the boxes, place the objects in the box and pass the box to the patient to put their hand in and try to guess what the objects are.
Fine motor skill box:
Four small boxes Paint (green, yellow, red,blue) Buttons (green, yellow, red,blue)
How to make it:
Paint the boxes the four colours and ask the individual to match the buttons to the box.
These boxes and bottles can be adapted for each person's need but they are cheap and easy to make. There are so many markets across the developing world where you can buy arts and craft materials and are so much fun to make. Enjoy!
Ibrahim Al Hussein represented the Paralympic refugee team in this year's games in Rio. He was named as one-half of the Independent Paralympic Athlete Team representing refugees and asylum seekers.
The inclusion of refugees in the Paralympic and Olympic teams has served to remind a global audience of the plight of those trapped in war-torn countries. As Ollie King highlighted in this blog 'The Syrian Refugee Crisis: Shining a light on the response to impairment, disease, and disability' that levels of conflict-related injuries are notably high in the case of the Syrian conflict. One in 30 refugees that fled to Lebanon, and one in 15 refugees in Jordan were injured as a direct result of the fighting.
Al Hussein story is no different in 2012 a year after the civil war broke out in his country, a bomb went off close to his home. The 27-year-old had taken shelter from the blast inside his house but was alerted when he heard cries for help from his friend. Courageously he ran out of the building and across the street to try and help his friend but was hit by a rocket, injuring his leg.
He managed to crawl away from the scene and was rescued by some of his friends. However the damage to his leg was too severe and doctors had to amputate the limb from the mid-calf down.
After his leg was amputated in Syria Al Hussein fled his hometown and first travelled to Turkey before reaching the Greek island of Samos, travelling on a rubber dinghy, to seek further treatment for his leg.
He was granted asylum in the country in 2014 where he started to swim again. As a child he was a keen athlete who dreamed to one day become an Olympic swimmer. After his leg was amputated he didn't give up on his dream and carried on training.
You can watch his inspiring story to Rio below.
Although Al Hussein didn't win any medals this year at the games he has contributed to changing the face of disability and refugees.
As we leave Phnom Penh mini vans pass by crammed full of workers, children are litter picking and early morning construction workers head off to work in the unforgiving hot sun. As we leave the city life behind beautiful green rice paddies roll on for miles and miles with palm trees scattered across the horizon.
The team is heading to Tboung Khum province located on the central lowlands of the Mekong river. Before we arrive we stop off for an early lunch at a restaurant in the neighbouring province Kampong Cham. Koy Phallany executive director of Khemara organisation informs we are stopping off for an early lunch because there is little food and water in Tboung Khum. Initially I think this may be an exaggeration and there must be some access to food and water nearby. But as soon as the drive towards the network of villages begins we see less and less shops, vendors and rows of stilt houses with nothing else around. I realise access to basic necessities is a daily reality for the families who live here.
Our first few stops are visiting a few families and each house we go to is as heartbreaking as the next. An orphan teenage girl who lives with her Aunt is desperate to go to school but her family are struggling to pay for her school books and uniform. We drive around the corner to visit a Grandmother who lost her daughter and one of her granddaughters a few days after childbirth. She sits cooing the remaining twin sister, the family are struggling to make ends meet even though the father has gone to a nearby province as a labourer sending money when he is able to. With a family of five to feed everyday is a struggle.
Unfortunately neither of these stories are unique with high unemployment rates and the area vulnerable to annual flooding the local people are stuck in a unapologetic cycle of poverty. In Cambodia, as in most parts of the developing world, poverty is recognised to be a major cause of disability. According to a recent DFID report by the age of two, half of all Cambodian children are stunted and malnourishment is a major cause of developmental delay and long-term intellectual disability. The findings are alarming but sadly unsurprising when I visited this rural province the report was contextualised and I realised the harsh reality the people here deal with on a daily basis.
One of our final stops of the day before visiting Khemara's daycare centres we visited a teenage boy called Sothea. At the age of six Sothea suffered from frequent seizures for a month which has now left him with a permanent physical disability and speech impairment.
His mother Huy travelled to the capital to see the doctor but could not afford the hospital fees and had to go back to Tboung Kham with her son. This isn't an uncommon problem Cambodians spend a high proportion of their income on health- approximately 10% and health expenditure is a major cause of personal debt. Because poor people lack access to basic healthcare many illnesses and injuries often result in long term disability.
Grinding poverty is not only a cause of disability - it is also a major consequence of disability. The majority of disabled people are often much poorer than their non-disabled peers. Disability impacts on a person's ability to work and earn a living. In Tboung Kham the majority of families are employed in agricultural activities, and with a mild or moderate physical disability this can limit an individuals capacity to work in the fields which has a consequent impact on the household income.
As Sothea reaches adulthood he will struggle to find employment in the local area. He has never attended school even though he is a bright young boy with a wicked sense of humour. As part of our visit we asked one of his friends to read to him when she gets home from school. We are looking to build him a Augmentative and Alternative Communication (ACC) device so he is able to communicate with the local people as he is often left alone for long periods of time whilst his family goes to work in the fields. But I leave feeling very defeated I'm unable to do more.
Although there has been some strong developments in disability care in urban areas of Cambodia access to care in rural provinces is still non-existent. There is limited or services provided for children to go to school or a rehabilitation centre often leaving disabled children with no care during the day. Families are far too often stuck in a perpetual cycle of poverty which is exacerbated by their socio-economic position and limited access to healthcare.
During my short stay in Tboung Kham I realised with disappointment in my heart that the problems of these villages will not be solved in the near future. The socio-economic and environmental issues which plague the local community will need a coordinated response from government organisations and NGO's developing a sustainable and viable plan for the local people. If and when this happens I hope that disabled people are factored into this development plan so young people such as Sothea are able to contribute to the development of this beautiful country.
If you would like to find out more about Khemara please visit their website and to donate please visit their JustGiving page.
