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Congo’s 7,000,000 Missing: How Persons with Disabilities in DRC are Finding Their Voice

Shoes are for hands

We who have so long been kept out of sight are beginning to take in the warm rays of the sun. In our eyes you will sense a spark. Hope is beginning to kindle among us; a flame thought forever extinguished.

Who are we? We are the Persons With Disabilities (PWDs) of DR Congo, but there are few statistics proving our existence. In a meeting I attended with Handicapped International in 2007, they estimated that we are 10 percent of the 70+ million population: a huge demographic for which to have so little data.

I’ve met with UNICEF leadership time and again to try and get them to facilitate the same educational programs for the disabled that they make available for the physically sound children. Their answer is always the same: There are no statistics to support funding.

I received the same answer from Children in Crisis, who have done stellar work in our province through the years, and have programs for children with disabilities in other countries. “We don’t have the statistics,” they said.

In a world where PWDs have been statistically enumerated in every way possible, in Congo, it seems, we are “out of mind.” We are set aside by our families and exploited by the unprincipled. But for survival’s sake, we have learned to appear grateful for any look our direction.

There are laws against discrimination here, but the only tangible evidence of these is that we don’t pay taxes. There are no mandates for public access, or even a consciousness toward inclusion in the business of life. Most of us don’t have crutches; even fewer have wheelchairs. The more fortunate among us use sticks to “pole vault” around. Others move around the dusty roads with their shoes on their hands. The blind are led around by children to beg.

We were the hunchback gatekeeper for a short time at CAPH, an NGO registered to support the handicapped, even though within their well-equipped offices, no disabled person will find employment or assistance. And soon, we too were chased away.

We were hired by employees of International Rescue Committee (IRC) to wash clothes, but were made the house “whore,” because no one can hear the cries of a mute. For this outrage, we sought justice from the Minister of Justice, but ‘Minister’ was only his title, and Justice was not in his heart. And IRC’s Dr. John Marie, was only reassigned for his reprehensible deed.

But, as mentioned, all of that is associated with our past. So what has rekindled us? I can tell you in one word: YOU. You are listening, and you are responding. We have begun to raise our voice about issues that affect us all. And you have replied with encouragement, training, and heartfelt words of support. You even published our Voice. Because you are listening, we have gained the COURAGE to speak.

A couple months ago, we mustered the nerve late in the race to approach a leading Parliamentary candidate, Mwanza, about our voice and our vote. And he embraced us. It was the first time a candidate had ever given us any regard. It was powerful and empowering. Next election, candidates will have to compete for our voice!

Before, we wouldn’t have risked it, but somehow now it feels that every word we speak has an audience who not only hears us, but feels us and supports us.

We have begun to see ourselves differently, which is causing us to be seen differently, and causing us to see a different future: not just for us, but for all of us. We are no longer just envisioning a New Congo; we are speaking into it, and you are saying “YES.” Your “Yes” is reverberating in our midst, and causing a rebirth in our spirits. And we now know we are in the heart of the New Congo; a heart that will only beat stronger as our voices grow. And World Pulse is amplifying our beat. Because of you, the world is beginning to feel our pulse.

This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous new media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.

Wheelchair Truck
Precious Daughter

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Celine's picture

Dear Sister

I join my voice to your own in saying YES into the new heart of Congo. PWDs need to gain acceptance any where in the world, and I am glad it is taking place in DR Congo.

Thank you for speaking it out and loud, your voice and those of others are reverberating around the world. They are being heard.

Love,
Celine

BlueSky's picture

Dear Sister

It brings tears to my eyes to see your comment appearing at the top, dear sister Celine. To experience your support from Nigeria bolsters us here.

And I like the way you phrased it: "PWDs need to gain acceptance..." In other words, what has changed in us is that we are no longer looking with an eye to see if others can accept us as their equals, but are simply stepping into our rightful place alongside the rest of humanity. We are stepping up and into life. Yes, there are many obstacles. But they are not our focus; where we are going is our focus. The gains we are making are not due to others acceptance, but because we are taking the necessary steps to be included. We are engaging in the things that matter; not just to us, but to all of us, because we are part of "all of us".

I don't mean to minimize our plight or the struggle, but my experience is suggesting that we are "gaining" because we have discovered that our voice is just as significant as any other. And this forum has done MUCH to make that point perfectly clear, thanks to YOUR response.

Love you like a sister, sister,

BlueSky

Ruth Beedle's picture

WOO HOO WOO HOO WOO HOOOOO!

....."what has changed in us is that we are no longer looking with an eye to see if others can accept us as their equals, but are simply stepping into our rightful place alongside the rest of humanity. We are stepping up and into life."

BRAVO!!!!!

I love that line immensely. Use it again and again and again!

R

WILDKat's picture

7,000,000 seen, heard,

BlueSky,
Good for you to bring light to the needs of so many. Clearly you have great compassion, given your personal experience with the tragedy of the quality of life for the unseen and forgotten citizens of the Congo. As we are linked in some way, we humans, what is good for the one is good for the many. If Congo resolves the needs of 7,000,000 disabled it positively influences its neighbors. If the US has successful disabled programs, they serve as models in some way for others.

I hear your clear call to action for World Pulse members to advance your call for greater awareness. You make a general point that because World Pulse is reading and writing these developing nation truths you are empowered to do/write more. This pleases me to see that simply by being a witness to what you write it further empowers you to reveal more globally about the Congo.

Did you research how disabled are enabling themselves in other nations, both developed and not? Using that information to craft a map could have become a pathway to the Congolese bureaucrats to fix the problem of 7,000,000-no small accomplishment. When I ask myself, "Have I learned something that I or someone with the power to change things in Congo could do something about?" The answer is soundly, yes. I had no idea the problem of the disabled in Congo was so large.

May I commend to you the article written by Duda, “Wit rules, strength rolls the logs.” She highlights the massive amount of positive change from the brave actions of a disabled woman in Serbia. Perhaps there is a conversation which might inform you both for greater progress in both your nations.

Naturally grateful,
Kat Haber

"Know thyself." ~ Plato

BlueSky's picture

7,000,000 seen, heard

Yes Kat, because World Pulse is hosting our developing-nation realities, we are experiencing the power of togetherness in our struggle, and in our fight to upright things. But even more than that, exercising our voice is giving clarity to what it is we really want. We may not have realized it had there not been a forum to talk about it, with our sisters around the globe. But what we all want with regard to our varying degrees of marginalization, is to be able to give what we've been inherently given to contribute. As PWDs, we're not first looking for toilets, and ramps, and elevators, but our seat at the table. And we're past the place of waiting for an invitation, but are of a mind to walk in a take a chair and begin to contribute, among all the other voices at the table.

I am believing the rest will come. What we want first is to see ourselves for who we are, and what we have to add to the mix. How others perceive us, we are making their problem - something they have to get over; not something we have to get past. Yes, those perceptions still create obstacles, but they don't keep us from moving in the direction we're headed.

There is not a mind among the Congolese bureaucrats to address the plight of the disabled. That state of things makes it all the more clear that we've got to be of the right mind about ourselves. No doubt that if we are, they will eventually come around - our state of mind will demand it.

I did indeed read and was inspired by Duda's article. I am reading my sisters articles as they are reading mine. And it is their mind that is affecting mine, and giving me the ability to affect the mind of my sisters here.

Thank you so much for your dialoging with me Kat - it is making a difference in me!

BlueSky

WILDKat's picture

YES-your words move me.

BlueSky,
OK now you are talking a language of beautiful, bold action!
These words make me get exactly where you are now:
"And we're past the place of waiting for an invitation, but are of a mind to walk in a take a chair and begin to contribute, among all the other voices at the table.

I am believing the rest will come. What we want first is to see ourselves for who we are, and what we have to add to the mix. How others perceive us, we are making their problem - something they have to get over; not something we have to get past."

I invite you to connect with famous disabled people from around the globe to read your article and invite them to be part of the change you see can happen in the Congo.
Someplace to begin...
List of Famous People with Disabilities
Famous People with Mood Disorders:
A mood disorder is a condition whereby the prevailing emotional mood is distorted or inappropriate to the circumstances. Types of mood disorders include depression, unipolar and bipolar disorder.

Richard Dreyfuss - Richard Stephen Dreyfuss (born October 29, 1947) is an Academy Award-winning American actor. Britney Spears - Bipolar Uncomfirmed. Britney Jean Spears (born December 2, 1981) is a American singer, dancer, songwriter, actress, and author.
Harrison Ford - (born July 13, 1942) Ford is best known for his performances in the Star Wars film series
Abraham Lincoln - (February 12, 1809 - April 15, 1865) was the sixteenth President of the United States,
Adam Ant - (born Stuart Leslie Goddard on 3 November 1954) is an English musician
Ben Stiller - Benjamin Edward Stiller - (born November 30, 1965) is an Emmy-winning American comedian, actor,
Carrie Fisher - Carrie Frances Fisher (born October 21, 1956) is an American actress, screenwriter and novelist.
Billy Joel - Born (May 9, 1949) Being a singer, a pianist and a songwriter Billy Joel has won 6 Grammys
Boris Yeltsin - Boris has suffered from depression and used drinking to try and reduce his problems
Brooke Shields - Brooke had everything fame could bring along with a pleasant marriage and child.
Buzz Aldrin - (born January 20, 1930) The American astronaut Buzz Aldrin had reached the moon.
Drew Carey - The famous comedian
Jim Carrey - A well known comedian actor appreciated by many.
John Denver - His songwriting and creative music before the 80's were inspired mostly by the feelings of depression.
Diana Princess of Wales - Diana, Princess of Wales
Ludwig Van Beethoven - Composer, Great was this man who was deaf and depressed.
David Bohm - David Joseph Bohm American-born quantum physicist.
Dick Cavett - Richard Alva "Dick" Cavett is an American television talk show host
Amy Tan-Author

Additional disabilities include:
Tourette syndrome. The exact cause of Tourette's is unknown, but it is well established that both genetic and environmental factors are involved. The majority of cases of Tourette's are inherited.

Spina bifida falls into three categories: spina bifida occulta, spina bifida cystica, and meningocele. The most common location of malformations is the lumbar and sacral areas of the spinal cord.

Cerebral palsy (CP) is a term encompassing a group of non-progressive, non-contagious diseases that cause physical disability in human development. There is no known cure for CP.

Epilepsy is a chronic neurological disorder characterized by recurrent unprovoked seizures. These seizures are signs of abnormal, excessive or synchronous neuronal activity in the brain.

Dyslexia is a specific learning disability that effects many people, it manifests primarily as a difficulty with written language, particularly with reading and spelling. Dyslexia occurs at all levels of intelligence.

Obsessive compulsive disorder (OCD) A psychiatric disorder manifested in a variety of forms, most commonly characterized by a persons obsession to perform a particular task or set of tasks.

Dementia is the steady progressive decline in cognitive functions due to damage or disease in the brain beyond what might be expected from the normal human aging process.

Hearing Impairment. A hearing loss is a full or partial decrease in the ability to detect or understand sounds. Hearing loss can be inherited If a family has a dominant gene for deafness.

Amyotrophic lateral sclerosis (ALS), and sometimes called Lou Gehrig's Disease, or Maladie de Charcot) is one of the most common neuromuscular diseases occurring worldwide today.

Club Foot or Feet. A clubfoot, or talipes equinovarus (TEV), is a birth defect. The foot is twisted in (inverted) and down. It is a common birth defect, occurring in about one in every 1,000 births.

Schizophrenia. Schizophrenia is a psychiatric diagnosis that describes a mental illness. A person with schizophrenia may show symptoms like disorganized thinking, hallucinations, and delusions.

Speech differences Stuttering is generally not a problem with the physical production of speech sounds or putting thoughts into words. Stuttering has no bearing on intelligence.

Poliomyelitis, polio or infantile paralysis. Acute viral disease spread primarily via the fecal-oral route. Spinal polio is the most common resulting from viral invasion of the motor neurons of the anterior horn cells.

Parkinson's disease is a degenerative disorder of the central nervous system that impairs motor skills and speech. Early signs and symptoms may sometimes be dismissed as the effects of normal aging.

Famous wheelchair users - Well known people who use wheelchairs since birth and later in life. Wheelchairs are used by people for whom walking is difficult or impossible due to illness, injury, or disability.

Sight Impaired is vision loss that constitutes a significant limitation of visual capability resulting from disease, trauma, or a congenital or degenerative condition that cannot be corrected.

Multiple Sclerosis (MS) a debilitating disease affecting the brain and spinal cord. No one knows what causes MS. It may be an autoimmune disease when your body attacks itself.

Asthma is a chronic condition involving the respiratory system in which the airway occasionally constricts, becomes inflamed, and is lined with excessive amounts of mucus, often in response to one or more triggers.

People with Asperger's Syndrome are often described, as having social skills deficits, reluctance to listen, difficulty understanding social give and take, and other core characteristics.

Amputees suffer the removal of a body extremity by trauma or surgery. A prosthesis is an artificial extension that replaces a missing body part.

Cleft lip or palate. A cleft is a congenital deformity caused by a failure in facial development during pregnancy. The term hare lip is sometimes used colloquially to describe the condition.

Meniere's Disease The disorder usually affects only one ear and is a common cause of hearing loss. Named after French physician Prosper Meniere who first described the syndrome in 1861.

Psoriasis is a disease which affects the skin and joints. It commonly causes red scaly patches to appear on the skin. The scaly patches caused by psoriasis are called psoriatic plaques.

Disabled World - Disability News for all the Family:
http://www.disabled-world.com/artman/publish/article_0060.shtml

You have touched a nerve, I hope that you will go beyond writing to right this wrong.

Naturally grateful,
Kat Haber

"Know thyself." ~ Plato

BlueSky's picture

Yes - Your words move me

Interesting idea Kat; perhaps inspired. I will give it a try. Thanks so much.

Ruth Beedle's picture

Once again you have written a

Once again you have written a story that needed to be heard and once again you shared your story with passion in your prose. I am glad that the world will begin to hear the plight and path of those in the Congo that aren't noticed, but will be with the beacon of your voice and the courage of your heart.

Thank you.

Ruth

BlueSky's picture

Once again you have written...

Thank you Ruth. Perhaps only you and Valerie know just how much I struggle over every word. There is so much to say in these short pieces, and the biggest challenges are to first learn what all is in my heart regarding these things, followed closely behind by just how to get as much of that, inside the lines of the page.

This was a particularly difficult assignment given the short word-limit, against the breadth of the subject. That, and the fact that there is so little established on the subject with regard to statistics. But perhaps that gives way for the greater message intended, which is that the greatest thing that has and is taking place, is healing. We appear disabled through one physical affliction or another, but we have been and are being made whole, within.

The greatest handicap is in one’s thinking. In our minds exist the world in which we live, and if there is not soundness in that part, one ‘walks’ through life with the most tragic disability of all.

We are so very thankful for what is taking place, and thankful for the part YOU have played in our healing.

As you know, I love you Gran sister,

BlueSky

Ruth Beedle's picture

While I was reading through

While I was reading through your message above the words 'I love you' were pouring through me, so it was with huge tenderness and tears that I read your last line.

It is a miracle to be connected to you from around the world. You are doing enormous work and it will be read and reacted to around the world.

Did you know that a previous Voices of Our Future correspondent recently won a Pulitzer Prize?

Oh, the places you can go and the things you can do.

And they call YOU disabled? HA!

R

Stella Paul's picture

Good ambassador

Dear friend

Few people can claim to be true voice of their people. But you sure can! And you have proved it yet again! On a slightly different note, have you applied to the WILD fellowship? If you, you totally should, now! here is the link http://worldpulse.com/pulsewire/exchange/post/48894

Best of luck and a big hug!

Stella Paul
Twitter: @stellasglobe

Ruth Beedle's picture

What a wonderful friend!

Stella,

You are absolutely precious to respond to BlueSky and cheer her on even farther. Thank you for your loving heart and powerful words of encouragement.

R

Stella Paul's picture

You are welcome Ruth

hehe, you know I once called her my Indian cousin :) its only natural to stand by one's cousin, right?

Stella Paul
Twitter: @stellasglobe

Ruth Beedle's picture

;-)

You are a sweetie!!

BlueSky's picture

You are welcome Ruth

I was thinking, "sister-in-law". I've got a very handsome brother... Ha!

BlueSky's picture

Good Ambassador

Thank you so much dear Stella for your generous comments.

And yes, I am applying to WILD. I am just waiting for one more reference to get back to me and will then get my application submitted. Thanks for encouraging me to apply.

Best to you sis,

BlueSky

valerie.bagley's picture

Bravo!

I just finished reading through this entire comment thread, and it brought tears to my eyes. What a beautiful sisterhood of support you have. It's wonderful to see what WorldPulse can do to empower a woman, and what YOU are doing using the resources you've been given to create positive change. Your gifts of hard work, perseverance, and expressing yourself are shining for everyone. Great work, sister.

Best,
Valerie

BlueSky's picture

Bravo!

Yes Valerie, it is wonderful. There's a lot of clear air here. You can see for miles and miles, or better, into generations. The advances being made by the women of this online community will not only impact our world, but the worlds of our children and their children. A community of pioneers, endeavoring to establish the world intended. And as each contributes their part, the picture of wholeness we've envisioned becomes more apparent.

Thank you so much for helping me to get things properly framed, dear sister!

BlueSky

Monica Clarke's picture

I'm humbled

I'm fortunate to be connected to you, thank you for your very deeply moving words. Yes, I'm so fortunate to be counted into the mosaic of your foundation of support, dear BlueSky. God bless you.

With lots of warmth and loving from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

BlueSky's picture

Ditto

Thank you Monica; the feeling is mutual. God bless you dear sister.

usha kc's picture

Hats off to you dear !!!!

Hats off to you dear !!!! such a great piece.

hugssssss

BlueSky's picture

Hats off to you dear!!!

Thanks so much Usha. And thank you for the hugs dear sister.

ikirimat's picture

You bring out critical

You bring out critical concerns about a group of people (PWD) and I gree that they too ca be a resource in development. In Uganda, they are considering being called Persons with Special Abilities, yes they have special abilities so, they need to be empowered and given an opportunity.
Well done

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


BlueSky's picture

You bring out critical

Thank you for the uplifting comments about PWD's Grace. Best to you dear sister.

mrbeckbeck's picture

7 million leaders

Congratulations on this excellent Op-Ed! Your argument is so persuasive... telling the world, "here we are, and we're ready to make our world a better place!" I am confident that this short essay can change the minds of many people.

You're a true leader, thank you for being here to raise awareness about these pressing issues.

Scott

Scott Beck
World Pulse Online Community Volunteer

BlueSky's picture

7 million leaders

Scott, your comment really touched me. I have had to take a couple days to let it sink in. I can tell by the way you phrase your sentences that each word is deliberate, and genuine. Your comments here and in Backlash of Rape in the Congo have greatly encouraged me. I appreciate your support and embrace; truly. And their weight sobers me entirely with regard to giving voice to the inspiration within.

Thank you dear brother. BlueSky

BlueSky,
Congratulations on a very informative and deeply touching story.

I am both shocked by the statistics and saddened to read about the experiences of PWDs. The empowering impact on PWDs when others listen is inspiring - seems so easy and yet what is in the way for much more. Your writing has great potential to encourage change. Imagine those 7 million people all empowered to make changes!

Your step to make PWDs more visible is significant; I look forward to hearing more about this incredible group of people.

Eileen

Eileen

BlueSky's picture

7 million empowered people - imagine!!

Dear Eileen (I love that name by the way - peace; to be set at one again), your comment has struck me:

"We are for inspiration!"

"We are a visible expression of significance emerging!"

"We are an empowering community of people!"

We look forward to living out our role of continually imparting empowering inspiration for living a life of increasing significance.

Sincerely Yours, BlueSky

Ruun Abdi's picture

Dear BlueSky, thank you

Dear BlueSky, thank you for been the voice of many whose voice wasnt heard, you are a true and passionate leader.

Hats off to you ma dear, I feel you sis and congratulate you for the courage to write this beautiful post which brings up the truth and situation on the ground.

Much love and admiration
♥♥♥♥♥♥♥♥♥♥♥

BlueSky's picture

Dear BlueSky, thank you

And thank you Ruun, for your feedback and warm embrace. This is exactly the sort of connection that has revived us. Bless you my dear sister.

BlueSky

Pushpa Achanta's picture

You are...

...much more than a statistic, my dear. Whoever needs proof of numbers isn't listening or seeing from the heart!

Continue empowering yourself through your touching and forceful expression and action and they'll soon notice!

Love, warmth and best wishes,
Pushpa

BlueSky's picture

You are...

Yes dear Pushpa, our gifts are making room for us! I just connected with a resource that has committed to an initiative to obtain the statistics we need with regard to disabled children in the most remote area of our Province. We are celebrating tonight!

Thank you so very much for your heartening encouragement. Best to you my Indian sister,

BlueSky

Greengirl's picture

I am touched and inspired

You've just proved beyond words that there is ability in disability. Your story is so inspiring that I want to read it over and over again. You are an inspiration and I admire your courage! I learnt sometime back that the best way to initiate/inspire/cause change is to first be that change. That is exactly what you have done. I see the tides turning in favour of the 7+ million population who have been missing in action in Congo. BlueSky, you have paved the way. I look forward to hearing your breakthrough stories as events unfold. God bless your large heart!

Lots of Love and Hugs,

Olanike Olugboji

BlueSky's picture

I am touched and inspired

Oh, thank you so much Olanike. Your encouragement keeps me inspired. Our world is changing before our eyes. It began in our heart, where your words have penetrated, and strengthened me.

Bless you so much,

BlueSky

Jensine's picture

A Masterpiece

Dear BlueSky -
This is a fine work of art - a masterpiece! Your leadership, your soul, and your wisdom shines bright on the page.

I love this line: "We have begun to see ourselves differently, which is causing us to be seen differently, and causing us to see a different future: not just for us, but for all of us." A New Congo is not only possible, she is already on her way thanks to your brilliant leadership.

I cannot wait to meet you in person one day!

Love,

Jensine Larsen
World Pulse

BlueSky's picture

A Masterpiece

Thank you so much Jensine for taking the time to read and make comment, and then to encourage so wonderfully. I have to give World Pulse so much credit for revealing to me what I couldn't imagine was laying dormant, just below the surface. Sure, I had the passion and the drive and the dreams, but this program brought definition not only to my purpose, but my right and even my capacity to pursue it.

Every assignment has drawn something more out of me, and every comment to every assignment has confirmed me, and encouraged me to go further, adding the strength of confidence in the hope that compels us. We are on a path, maybe beating out a path, and while we may not know exactly what it's going to look like once we arrive, we know where we're headed, and that we're going there together.

And to meet you would be icing on my cake!

Love to you, Gran sister,

BlueSky

Noreen D.'s picture

We will rise together

Dear BlueSky,

I am heartened by your stories.and posts. I am inspired by one so young becoming the voice for millions of people around the world. But, just as I know it is the decade of Women Rising worldwide, so,too, is it the time for disabled women (and men).

I am 65 and just beginning to explore my brave new world, realizing that my disabilities are really my blessings
.
{ intend to collect the stories of the disabled all over the world, anthologize them in a book. It's time the world, especially the United States, read them and acknowledged their disabled brothers and sisters. I would welcome your input and advice.

I stand with you as you persue your calling to better the lives of the disbled in the Congo and the world. You are truly blessed.

Your sister in the U.S., Noreen

Noreen Donohue

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