Photos by Chelsea Dee
By Louise Kinross
In 2013, BLOOM covered a unique sewing project in Maai Mahiu, northwest of Nairobi, Kenya, that was changing the lives of mothers of children with disabilities. The project—then called Malaika Mums—is still flourishing and is now called Ubuntu Made. Mothers in the program make cotton bags, reusable coffee sleeves and beaded bracelets that are sold online and through Whole Foods, Zazzle and other businesses. In addition to providing the mothers with a good wage, the income supports an onsite school with rehab services for their children. Ubuntu is an African philosophy meaning “I am because we are,” reflecting the idea that we are all connected. We got an update from Wanjiru Kanuri, a program assistant at Ubuntu Kids.
BLOOM: Why is there a need for this program?
Wanjiru Kanuri: Many Kenyan communities still associate disability with curses and bad omens. This impedes the country’s development of services for children with disabilities, prevents parents from accepting their children’s disabilities, and makes social inclusion for these children almost impossible. We provide specialized education, therapy and rehab services while trying to shift the mentality surrounding disabilities to bring 10 per cent of our population out of the shadows.
BLOOM: What is the goal of Ubuntu Made?
Wanjiru Kanuri: Ubuntu Made is a social business committed to creating lasting changes in the communities we serve. Rather than making products and sourcing materials from other parts of the world, we focus our efforts on specific Kenyan communities, creating full-time jobs, including benefits like healthcare for our makers and their families. This is unheard of in Kenya, where only 10 per cent of the [population] has health coverage. This provides our makers with stability for their lives and their families.
We source many of the materials in our products locally, stimulating the Kenyan economy as a whole. We view our supply chain—from suppliers to makers to our customers—as links providing an ultimate exchange of good from start to finish. Ubuntu Made offsets the cost of our Ubuntu Special Needs Centre. Our revenue stream is a hybrid between earned and donated.
BLOOM: What products are produced?
Wanjiru Kanuri: They include leather and canvas travel tote bags, journals, beaded portfolio bags, printed kanga bandanas, beaded Maasai bracelets and reusable coffee sleeves.
BLOOM: Is Whole Foods still the major buyer?
Wanjiru Kanuri: Yes, Whole Foods is a major buyer, but we also have a presence on Zazzle and in boutiques across the country.
BLOOM: How many women work in the Ubuntu Made factory?
Wanjiru Kanuri: Twenty-five women work full-time.
BLOOM: How does this change their lives?
Wanjiru Kanuri: They find empowerment through full-time employment and entrepreneurial skills training. They go on to buy land, start local businesses, create savings accounts and build homes. They are able to access medical coverage for their families and send their kids to school.
BLOOM: Tell us about the Ubuntu Special Needs Centre.
Wanjiru Kanuri: We have 50 full-time children ages two to 15. Their diagnoses include intellectual, physical and/or developmental disabilities like cerebral palsy, Down syndrome, spina bifida, autism and epilepsy. We advocate for early intervention and have children less than a year old who are already on therapy schedules.
BLOOM: When we did a story in 2013, your school was the only one available for kids with disabilities there. Has that changed?
Wanjiru Kanuri: We are still the only well-established centre for children with disabilities in this area, but we work closely with our partners, including the [government], special education professionals, the Sarakasi Trust, the Kijabe Hospital and Special Olympics Kenya.
BLOOM: How is disability viewed there?
Wanjiru Kanuri: Previously the attitude was bad and parents hid their children. But we have seen that changing, and people are having more positive attitudes towards persons with disabilities.
BLOOM: How has your program changed perceptions?
Wanjiru Kanuri: Our inclusion events connect community leaders, the community at large and children with special needs to break through the barriers of stigma and lack of understanding. Through our advocacy and creation of awareness we have seen great gradual change.
BLOOM: When we last wrote about your program, there were many children on a wait list to get in. Is that still the case?
Wanjiru Kanuri: Yes. We have even heard of cases of people relocating here to Maai Mahiu so that they are able to access our service. We are working towards building a [larger] educational and therapy facility for children with special needs to be able to accommodate all of the children.
BLOOM: What is a typical day like for students?
Wanjiru Kanuri: We’re open Monday to Friday. Days include basic class activities, daily living training, hand skills activities, therapy sessions, meals and play time, including nature walks and play therapy at the playground. We even have monthly excursions and other outdoor activities.
BLOOM: What’s the greatest challenge of running the program?
Wanjiru Kanuri: Finances. Eighty-five per cent of our families are not always able to pay to get their children to the school. We have in-home visits to alleviate this issue. Our team has a very strong fundraising arm and, outside our enterprise programs of Ubuntu Made, Café Ubuntu and Ubuntu Water, they work to raise funds to expand programs and foster more inclusion.
Visit Ubuntu’s shop to see the products available. These photos were taken by Chelsea Dee and generously given to BLOOM.
Two Blind Brothers is a new luxury clothing brand in New York City named for its owners—brothers Bradford, (right) 31, and Bryan Manning, 26. Bradford and Bryan have Stargardt disease, which is a type of macular degeneration that causes blindness. The company's mission is to cure eye disease by donating all profits to research.
The clothing line tells the brothers' story: Bradford and Bryan use their heightened sense of touch to select the softest fabrics and incorporate braille, their “secret language” as kids, into the design. For example, a metal tag on each shirt is engraved with raised dots that say “brother,” “vision,” or “feel.” At Two Blind Brothers, reading with your fingers is cool. BLOOM interviewed Bryan.
BLOOM: How does Stargardt disease affect you?
Bryan Manning: The big difficulty for me in my day to day is a lot of small things—recognizing faces, reading menus, sometimes navigating New York City. I’ve walked into the wrong Uber many times, which is always a fun incident that gets a couple of laughs and a few weird looks. In my professional life you have to be very detail-oriented in everything you do, especially when worrying about something like buttons on a shirt. You have to really double check your work a lot with visual impairment. A comma and a period can look very similar, as can an ‘o’ or an ‘e.’ So making sure you’re diligent [is important].
BLOOM: Do you still have peripheral vision?
Bryan Manning: With Stargardt, you have trouble metabolizing vitamin A, which destroys your central vision, so there’s a dark blurry spot in the centre of your eye. We have some peripheral vision—it’s not 20/20, but far better, which is why we can get around the city without too many problems. Seeing finer details or distances becomes an issue.
BLOOM: Are there any strategies that help you with that?
Bryan Manning: Having good friends is really beneficial for things like reviewing a menu. The best thing in the world from a technological standpoint is using an iPhone to zoom in. Bradford and I take a lot of photos. If you were to go through my phone you’d wonder ‘Why does he love street signs so much?’ We end up taking pictures to figure out where we are. We both use Apple computers which have a great zoom function. So for day to day, Apple products with zoom are the best thing in the world.
BLOOM: What was it like growing up with vision loss?
Bryan Manning: Our parents were unbelievable. They always allowed us and pushed us to try everything we could dream of. So if we wanted to play soccer or football, we were there every day. They allowed us to try and fail, which is the best thing that ever happened.
As a kid, when you have anything that’s different, you’re going to get a little picked on. So a kid saying ‘How many fingers am I holding up?’ was a common occurrence. But we had a lot of great structure around us. For me, having a big brother I could call and he would turn it into a joke and we’d laugh about it together was a great thing.
It can be frustrating as a child when you don’t quite have all of the coping mechanisms for how to deal with problems. I do think it’s a blessing in its own way because you learn from a young age how to deal with issues. You learn how to slide through a conversation when you don’t recognize a person, and because you have to walk up to a chalkboard to do the math problem, you become a bit more comfortable putting yourself out there.
BLOOM: Did you get the accommodations you needed at school?
Bryan Manning: Anytime we would ask for anything, we got it. We had a vision teacher when we were much younger and she taught us to read braille and gave us a lot of methods to deal with problems. Bradford and I both went to the University of Virginia and it was great. I give a lot of credit to my high school. They were always accommodating, but they also held you to the same standards as the other kids and that was an important lesson.
BLOOM: What was most challenging about growing up with your disability?
Bryan Manning: One of the more challenging things was that with a degenerative disease, they don’t know when the vision loss will stop.
BLOOM: That sounds anxiety-producing.
Bryan Manning: It wasn’t in the forefront of our minds every day, but it was challenging. I give a lot of credit to the support system our parents and vision teacher gave us. They would say ‘Yup, there’s a chance this happens, but we’re not going to think about it. We’re going to live every day, and when we get to a problem, we’ll deal with it.’
BLOOM: Is your sight still deteriorating?
Bryan Manning: It’s different from person to person. There’s a pretty severe decline in the first few years and then a steady progression for 10 years. And then it usually plateaus. For me when I was first in high school I could read 12 point font.
BLOOM: What size font could you read now?
Bryan Manning. I don’t know. 'Big.' I have a wonderful girlfriend who reads everything for me or I zoom in on computers.
BLOOM: There was an essay last week in the New York Times by a guy with physical disabilities who said: ‘Long ago I decided that if I was going to like myself, I had to make friends with the disability that was inherently part of me.’ Was that a process you went through?
Bryan Manning: That is a phenomenal quote. I love that. I do think vision loss is tough, no one will make a claim the other way, but I do see an incredible amount of positives in it. It really has been a bit of a blessing. It’s shaped who I am today and Bradford and I have the best partnership in the world. Bradford and I could always joke about it, so it was never seen as a disability, but as hey, here’s something you have to deal with. We always poked fun at ourselves with it. If you’re willing to accept and make friends with a disability it becomes so much easier and your life becomes a lot simpler and happier.
BLOOM: How did you get the idea for your business?
Bryan Manning: It’s a funny story. We love doing little projects together. We were trying to come up with a way to give back to medical research, which we love so much, but also to a community that has been so great to us. One day we were shopping in Bloomingdale's and we lost each other after about five seconds. That always happens. I need to put a tracker on Bradford. Because we can’t see the clothing that well, we run our hands over everything and when we find something we like we pull it out and take a closer look.
BLOOM: To take a photo then and blow it up?
Bryan Manning: Yes, we’d see what size it is or who makes it and what the quality is. Does it fit us and is it a men’s shirt? Once I chose a women’s shirt. Anyway, this one day we got separated and when we got outside we realized we’d actually bought the same shirt.
BLOOM: You both picked the same shirt—at a store the size of Bloomingdale's?
Bryan Manning: Yes. We had this ‘aha’ moment where we thought maybe there is something to do with touch: there’s a bit of science that when you lose one sense, you become more aware or pay more attention to your other senses because you have to. Bradford and I learned braille from an early age and it’s a whole language based on feel. We believe if you pay attention to it, and focus on it, this sense of touch becomes stronger. We thought we’d build Two Blind Brothers around touch and softness, but also try to create a community around something to do with visual impairment.
BLOOM: How do you describe your clothes?
Bryan Manning: We sell luxury casual wear, but it’s more than that because it’s cause-driven clothing. We don’t take a salary and 100 per cent of our profits go back to medical research. We’re striving to produce not just a shirt we think is the most comfortable you’ll ever put on, but when you wear a Two Blind Brothers shirt, you’re supporting a mission. You’re supporting this fight against blindness. From our standpoint, you’re joining this community and brotherhood around trying to have clothing represent something more than just making money. It represents a value system I believe.
BLOOM: I love that the name and products incorporate things related to blindness and braille. Was this a conscious choice and why?
Bryan Manning: I’m not going to take all the credit. We both learned braille at an early age, which was great because it was a secret language between Bradford and I. Putting braille on the clothing seemed like such an homage to where we came from. Braille is really a relic in that everyone knows what braille is, but no one really knows what it says. So some of our t-shirts say ‘brother,’ ‘look,’ or ‘feel.’ It’s representative of what the brand is. We love the stylistic idea of being able to read the word but have the word stand out to you as well. It’s who we are and what we represent.
BLOOM: I'm glad you didn't shy away from what makes you unique.
Bryan Manning: You have to embrace what is different and unique about you. Everyone has things they’re great at and not so perfect at. Embracing the things you’re not perfect at, and loving yourself for those things, is what makes you happiest, I think.
BLOOM: I understand you’re trying to raise $1 million for research. What type of research are you funding?
Bryan Manning: We’re focused on pre-clinical trials for new gene and stem-cell therapies, where we think we can provide the most value. We’re also working with the Foundation Fighting Blindness, which is 45 years old and is near and dear to our hearts. It’s been a giant beacon of hope for us. We work with them quite often.
BLOOM: I read that you don’t take a salary from the company.
Bryan Manning: Bradford worked in wealth management and I was in data sales and we were successful in our previous careers. Our idea was that we’d rather cure blindness than put another penny in our pocket.
BLOOM: With some disabilities, like autism, there’s a tension in the community between people who want a cure and people who want acceptance and support for those living with the condition. Have you thought about funding programs that improve quality of life for people who are blind?
BLOOM: Bradford and I are more focused on a cure from the monetary standpoint. We’re very big into science and we love that aspect of it. Once you start curing visual diseases, they’re all very related. The eye is a fascinating organism and we think some of this eye research can be expanded to the rest of the body. But that isn’t tomorrow. The idea of acceptance and quality of life and community building is incredibly important to us. Curing blindness is the goal, but there has to be a lot in-between. That’s why we try to talk to our community. We get messages every day that make us smile and laugh and almost cry with just how sweet and kind they are. We try to open dialogue with anyone who’s interested.
BLOOM: There’s an interesting piece on your blog The Blind Spot called 5 Life Hacks For People Who Are Visually Impaired. Will you be offering more content like that?
Bryan Manning: Our limitation right now is manpower. We’re spread pretty thin. We’re redoing our entire website with the hope of having a lot more flexibility to create content, and make the site more interactive and interesting. We’d like to build up the blog and the community side of the site.
BLOOM: Have you faced any obstacles promoting your clothes related to the way our culture devalues disability or difference?
Bryan Manning: That’s a great question. I have only experienced love from everyone we’ve reached out to and everyone we’ve spoken to. There’s been a side of the business that’s shown us how many unbelievable and kind people there are out there in the world. We’ve only felt great and positive things. It’s been humbling to say the least.
Watch Bryan and Bradford Manning talk about Two Blind Brothers on The Ellen Show.
By Louise Kinross
It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?
For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.
But it wasn’t until American social entrepreneur David Green got involved in 2013 that he found a way forward.
This year Jan and David—along with Emily Lutyens and Brandon Burke—founded LegWorks, a socially-minded business that aims to make high quality prostheses available to amputees worldwide regardless of their ability to pay.
The all-terrain knee is its first product. The knee is sold at market rates in 10 high-income countries so that it can be sold at, or near, cost to non-government organizations, hospitals and rehab clinics in 10 low-income countries. They then provide it at low or no cost to consumers.
“We’ve developed a product for people in the developing world that is also innovative and useful in developed countries,” Jan explains.
The all-terrain knee uses a proprietary locking mechanism that locks the knee when the user extends his leg, preventing falls that occur with traditional knees that require people to place weight on the foot before stabilizing. “Amputees are prone to falling,” says Jan. This is because traditional knee joints lock when the user puts weight on them. “But if they don’t place weight correctly, which happens, the joint may not lock, causing the user to stumble or fall.”
The all-terrain knee is a rugged, high-performance waterproof knee.
About three million people worldwide have above-knee amputations. Most live in the developing world, where less than 15 per cent have a prosthetic. “That means they can’t function,” Jan says. “Most jobs there require manual labour, so they’re unable to work and support themselves or their families.”
Jan published a study this summer of 10 young adults in Chile who wore the all-terrain knee for two years and compared it to their old prosthesis.
Based on walking tests, heart-rate monitoring and questionnaires, Jan’s knee showed a number of advantages. Study participants found the knee improved their stability while standing and walking and made it easier to get around: when wearing the new knee, they expended 40 per cent less energy than they did with the traditional prosthesis. The new knee also supported natural movement in the pelvis, whereas the weight-activated knee caused a pelvic tilt that could create long-term musculoskeletal problems, Jan says.
Nine out of 10 study participants chose to continue using the all-terrain knee following the study.
“In places such as Cambodia, we aim to provide the knee at, or near, cost to non-government organizations who will provide it to low-income individuals,” Jan says. “In developed countries, we provide the knee at prices that coincide with local reimbursement systems.”
The all-terrain knee is sold in Zambia, Colombia, Haiti, Guatemala, Turkey, India and Cambodia. It’s also available in North America, Australia, Europe and Russia. Almost 500 knees have been sold.
Jan notes that while bionic devices based on microprocessors cost over $150,000 in the Western world, most amputees in poor regions can’t afford “the most basic device that doesn’t work well. There is such an inequality.”
Jan says NGOs love the knee because “the technology works well and patients want to keep using it.” One of the challenges in getting the knee to people in the developing world is a lack of prosthetists who are trained to fit them.
Three years ago LegWorks “lucked out with seed funding of $100,000 from Grand Challenges Canada,” Jan says. “To get the funding we had to present how we would translate the technology. Grand Challenges put me in contact with the social entrepreneur David Green.”
Jan learned about David’s model of compassionate capitalism. David helped create a company in India that manufactures artificial lenses used in cataract surgery at a selling price of $4 a pair as opposed to $150 in the U.S. This enables a local hospital to perform over 300,000 free or low-cost cataract surgeries each year.
Jan says he’s excited about advancing science to meet the needs of amputees. “In developing countries people with disabilities are looked down on and excluded,” Jan says. “This leads to even greater poverty. Providing them with a well-working leg gives them the opportunity to regain their lives.”
Photo above by Patrick Brown © 2014 Panos
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