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The Right to be Seen and Heard: Case Analyses at the Academy

Close your eyes, put your hands over your ears until all sounds vanish, and imagine this is your life. Imagine this is the way you perceive the world while sitting in a university lecture hall. No voices. No clear images. And still an exam at the end of the term. How would you survive in a foggy jungle where you are without words; in an environment relying on visuals and signless language as the standard pedagogy? 
             
Now, open your eyes.  Remove your hands.  Take in all of the sounds, sights, and feelings. For you, this experience of both worlds is a privileged reality. But for Gijs Bruggeman, the first of those worlds is simply reality. 
             
A decade ago, Gijs was an intelligent young man eager to begin his studies at a university. Unfortunately, most of the higher educational institutions in the Netherlands that he applied to hesitated. How could they accommodate a student who had not been able to hear since birth, and with a mere ten percent of standard vision, only able to perceive a narrow tunnel in front of him? How could he attend lectures, participate in discussions with hearing students, take notes or even find his way around the facility? While other countries had successfully integrated students with special needs into 'normal' schools, the Netherlands still segregated those students into 'special schools'.  Not one Dutch university existed to attract, enroll, and serve deaf or blind students.  So Gijs found one that did.             
           
We met Gijs for the first time during the Humanity in Action Core program in Amsterdam. His lecture on disability rights revealed a personal story: an optimistic and persevering deafblind young man who had followed his ambitions despite limitations. Gijs sat down with us and talked about his experience using American Sign Language.  On this occasion, he worked with a Dutch translator who spoke English to us.  
When we meet him again for another interview at the Dovencentrum, a cafe-like environment which serves as a meeting point for the deaf in Amsterdam, we are joined at the table by a sign language translator.  Gijs reaches out his hand to us and shakes it while clearly pronouncing his name.  During the conversation, he uses Dutch Sign Language to convey his words since that is the language in which his translator is fluent.  As one could imagine, translating from sign language to Dutch, and then to English, is not only exhausting but limiting.  Who knows how much is lost in translation along the way?  This serves as a rather perfect reflection of the challenges that persist for deafblind people. 
Gijs describes himself briefly in an information sheet. We wonder how many times he has had to tell his story over and over again. Not surprisingly, he has summarized it in order to avoid the usual questions.  
My name is Gijs Bruggeman.  I am 32 and I work as a coordinator for the deafblind at Foundation Welfare of Deaf People in Amsterdam (SWDA).  I have Usher syndrome Type 1, meaning; born deaf, no balance and the onset of retina degeneration at the age of nine. At the moment I am a legally deafblind.  I have tunnel vision about 10 degrees and acuity of less than 20 percent.    
Gijs' story traces back to his childhood.  Diagnosed at the age of 18 months, he was the sole deaf person in his family.  "My parents had no clue how to deal with it in the beginning. They started to collect information about deafness and the impact on one's life and family."  
          
A journey through the labyrinth of doctors and medical treatments slowly proceeded, yielding little results. Moreover, the home counseling was unhelpful.  "The consulant wanted to talk with my mother about her emotions, but what my mother really wished to know was a more pressing question:  how could she communicate with her son?" 
When Gijs was two and a half, old enough to start school in The Netherlands, his parents assumed they had no choice.  "Deaf children had to go to deaf schools, and mainstreaming was not possible." The options for Gijs were quite limited.  At that time, in the entire country there were were only three boarding schools and two day schools for the deaf.  Even at the deaf school, his poor speech was interpretated as a sign of learning difficulties. "Acquiring spoken language is one of the biggest problems for deaf children. It is like learning Italian by watching Italian television without voice." According to the school psychologist, Gijs would have to be transferred to a department for deaf children with multiple handicaps. "My parents refused, fortunately. The education level of deaf schools is already lower than mainstream schools, but the special departments are even worse.” 
 
Studying became even more difficult after Gijs was diagnosed with Usher Syndrome when he was nine. His vision worsened every day, and he had to attend a special “deafblind” school in Sint-Michielsgestel in the south of the Netherlands.  Even today, he still sounds disappointed when reflecting upon that time.  "Sign language was strictly forbidden and much effort was put into lipreading and speech training in order to become 'just like normal people'." 
Gijs says he felt hopeless. Intellectually he was on track, and yet he still had to repeat things again and again without attaining real or challenging goals. "I realized reading was the only way for me to develop my skills, so I became a 'bookworm'". When Gijs was old enough to start high school,  he was again rejected by a 'normal' deaf school because of his poor speech, but he didn't let that get to him. 
"I decided to teach them a lesson. Difficult as it was, I managed to enter a 'regular' school for hearing students with a personal sign language interpreter."  Gijs still seems to feel mildly proud when he tells the story.  "But even though attending this normal school helped me to gain self-respect and confidence, due to my Ushers, the higher years of high school became too complicated to cope with. That was when I found out the Netherlands offered no future for me and took the plane to the United States!" he writes.  
"A whole new world opened up to me," signs Gijs after telling us about the 'Explore your Future' fair for disabled students  "When I went to the U.S. for university, I was confronted with open-minded people and a supportive environment with many services," he says.  It was a far cry from the Netherlands, he explains.  While the Dutch government provides adequate services to people with disabilities, the tone is different. "They don't think you can get very far.  In the U.S., they will give you the chance and support to do it, and you're treated like an equal along the way."          
Indeed, Gijs attended the only college in the world designed specifically for deaf and hearing-impaired students, called Gallaudet University, in Washington, D.C.  All classes are taught in American Sign Language, and all people – both hearing and non-hearing – communicate in sign language.  However, Gijs first began at hearing university in The Netherlands.  "The government initially rejected my request to study in the U.S. because of financial reasons," he explains.  His persistence and drive, exhibited by the quickness of his hands as he speaks to us, is also reflective of his own story.  "Once I pointed out, though, that a sign language interpretor costs three times more than Gallaudet's tuition, they finally agreed." 
Gijs looks back at his university years with nostalgia. "The American approach suited me very well.  Instead of receive the message "you can't" all the time, teachers rather would say, "Yes, you can. Let's try and see!"  He says that the Dutch educational approach for disabled people is reflective of the welfare state model, whereby the government provides for you instead of empowering you to do what you can on your own.  "The government provides excellent social services, but what can you do with them if you are not challenged in your potential?" 
Back home, Gijs decided to put all of his strength and knowledge into the empowerment of Dutch deafblind people.  In December, he found a new job as public relations manager at the Foundation for Welfare of Deaf People. "This job allows me to strive for my personal and societal goals: increasing the awareness of deafblind people within the deaf community, because too long deafblind in the Netherlands are unheared and unseen". 

Beyond Eye Contact 

It just takes a few clicks before Bram Shultinge’s face appears in the small window on our computer screen.  A blond young man in his twenties, Bram smiles while we test the microphone.  In the background we can see his student dorm room. His seeing-eye dog, Barry, must be asleep in a part of the room invisible to the webcam. Bram has lived on his own since his eighteenth birthday. “Quite unusual for a blind person, right?” Bram remarks.  After talking to him for an hour, we are convinced Bram can’t be labeled a ‘usual person’. Despite his disability, he will celebrate his undergraduate degree this summer after five years at the University of Groningen. 
Bram still remembers little of the first five years of his life, his seeing years. “After the anesthesia wore off, the doctors noticed my eye nerves were destroyed," Bram says, describing the moments after the doctors removed a tumor from his brain. "All I could see were some blurry clouds." 
 Still, Bram thrived in the years that followed.  His parents sent him to a school for blind children, a so-called "special school" in the Netherlands.  Like other European countries, the Dutch more often than not send students with disabilities to small, specialized schools.  Meanwhile, in Canada and the U.S., nearly all students are integrated into regular schools regardless of ability.
 
"My special school prepared me to deal with my disability," Bram explains.  He attended a school with only thirty students until secondary school.  "I think it's important to teach disabled students to function in a 'seeing' society, yet they should join a regular school as soon as possible."  Bran learned how to read Braille, navigate in the city using a blind-stick and guide dog, and use technology to do things that seeing people often take for granted. 
As Bram is speaking with us, we ask him about the devices he uses.  "Do you want to see it?" he asks as he reaches for the webcam.  His computer's eye shows us what he can only feel: a specially-designed Braille line where tiny pins communicate individual letters to Bram's fingertips.  Those changing relief combinations together represent a line of the characters on the screen. It is fascinating to see how the pins start to dance as Bram navigates with the arrow-keys. “This device allows me to read line by line," he says.  Because of the difficulty involved in document searches, he memorizes texts as much as he can to avoid scanning a document again.  The laptop also has a speech program that reads documents out loud.  "But after a while, the computerized voice drives me crazy," he chuckles. 
Using a laptop with a Braille line means that Bram can read anything, as long as it is converted digitally.  To say the least, this proved to be a cultural adjustment for his teachers in high school. “In 1995, ninety percent of them didn’t even know how to use a computer mouse," he recalls. "Then there was this blind student asking them, ‘Can you give me this and that on a floppy?’"  He acknowledges that the process must have been difficult on the teachers as well.   "Afterward, many told me that they were glad I pushed them to improve their computer skills,” he says with a grin. 
At university, the digital divide resolved itself as the years progressed, although it was his main reason for switching majors.  "Studying History often requires you to read ancient texts in original form.  That's the main reason why I chose law instead."  Law, he says, applies to everyone and has to be accessible for all.  "I know some blind lawyers, prosecturos, and judges," he says.  "They have made it a little easier for me." 
In the middle of our online conversation, the chatter of a cell phone pierces through the webcam microphone.  An indistinguishable voice informs him who is calling.  Ever polite, he ignores the call, but we can't help but wonder about his social life. 
"Most of my friends are seeing friends," he says.  He goes on to explain that he has largely lost contact with those at his special school, though he has started to participate in his university's Commission on the support of disabled students.  Meeting new people, however, comes with some unique challenges. "I hate it when strangers stare at me," he says.  "When I was growing up, people treated me like a child, or like I was mentally challenged."  It's plain to us that these must have been challenging years, but he quickly pushes on.  "But I don't see that happen much anymore." 
Still, social scenes can get complex.  "I don't lack social skills, but when I go to a bar or party, I always have to wait for the other person to make the first step."  He points to forming romantic relationships as a striking example.  "The game of flirting is very visual.  It's all about eye contact, and the first looks are the ones that matter," Bram says.  "When an interesting person finally approaches me, talk about my blindness follows."  He feels perfectly comfortably talking about his disability and telling his story, but once that's off the table, he wants to talk about other things.  "I am used to telling that story, but I want people to like me as a person, not because they pity me."  

“We Do What We Can”

At over 28,000 students in seven faculties, the University of Amsterdam stands as one of Europe's most comprehensive research-intensive institutions of higher education.  The campus, stretched over the entire city of Amsterdam, boasts both historic and modern buildings along bustling canals and alleys.  Students on bicycles zip past, as do most other citizens of the city, yet one must wonder:  what must this university be like for students with disabilities and special needs? 
We met with Claudia Fluggen, a student counselor at the university's Division of Student Affairs, to discuss this question at length.  With another student counselor, Claudia works with students who have visible and unseen impairments, ranging from dyslexia and other learning disabilities to physical challenges such as being in a wheelchair.  With six to twelve per cent of the student body reporting some type of disability, it's no easy challenge. 
"We try to help guide students and provide services necessary for their education," she says.  Such services include writing letters to teachers explaining one's disability, crafting policies to provide enough time for exams, and being a resource for students when needed.  They also work with student advisors to provide "reasonable accomodation", as required by Dutch law. 
It's plainly clear to us, after meeting with Claudia and her colleague at VU University Amsterdam across town, Marjolein Touwen, that the student counselors do their best based on the resources and infrastructure available.  Yet, the Dutch government and university administration provide quite limited support to Claudia and Marjolein given what they require to be successful at their jobs; consequently, it is difficult for students with disabilities to succeed. 
"We don't have many deaf and blind students at the university," Marjolein says.  When pressed on whether this may be due to limited access and preparation for higher education among these populations, she hesitates.  "I'm not sure why," she says.  "Maybe they aren't going to college," a suggestion that is supported by most estimates regarding the typical educational level of those with disabilities.               
Both universities are following three year master plans devised to improve accomodations for students.  The Ministry of Education funds their efforts, but at 67 000 euros per year, only nominal efforts can be exercised.  "We can't cover everything," Marjolein says.  "But we do what we can."  The funding provided by the ministry will run out at year's end, at which point things appear uncertain.  "We're not sure what's going to happen," Marjolein says. 
What may be most bothersome and concerning to these students are the lack of accomodations for educational needs.  "Blind students often have their own devices from secondary school, so we often do not need provide those things," she says.  And when a student requests to have textbooks converted into digital form, like Bram at the University of Groningen?  "Well, that's often a problem," she says.  
Despite their limited capacities, both Claudia and Marjolein actively work to improve conditions for disabled students.  Both universities attempt to involve special needs students socially, such as the Student Platform at VU, where students get together during lunch or for group activities.  They also place an important emphasis on informing the broader university communities about the presence of these students, either through videos that showcase particular students, or feature stories in university newsletters.  
Nevertheless, in the end these policies seem arbitrary and obscure, at best.  Faculty and professors largely assume responsibility for granting students additional time on exams, extra notes or study rooms, and digital textbooks.  As Marjolein notes, each faculty member can have a completely different approach to interpreting the needs of disabled students, something she and others at VU hope to change this fall.  In September, the university will launch a pilot program to provide identity cards for all special needs students, which would identify their disability and their needs.  "The cards will allow the student to simply show the card to a teacher without explaining their story again," she says.  Yet, because students are not required to register with her office, some students are bound to keep their disability private and perhaps struggle to succeed at the university. 
Regardless of the planning, actions, and good intentions of university staff and teachers, the judgement that truly matters is the perspective of each student.  And while Bram at the University of Groningen may have had a largely positive and affirming experience, other students believe the academy should be doing more. 

Deafness of Bureaucracy 

With the election this June of Adam Kosa to the European Parliament, many people might claim that the glass ceiling for people with disabilities has truly been shattered.  Kosa, a deaf person and sign language user, represents not only his home country of Hungary but also millions of Europeans with significant limitations, as the first deaf person to reach the body.  Yet to Wouter Bolier, a deaf university student living in the Netherlands, the world hasn't changed fast enough.  "Deaf and hard of hearing people have to fight so hard for our rights," he says, exasperated.  "Living in a Western country in 2009, this is not what civilization looks like."  
Raised on the sparsely populated West Frisian Islands in North Holland must be challenging for any child, let alone a nearly-deaf boy, but for Wouter, the real test came a bit later.  "In my final year of secondary school, I became totally deaf," he says, explaining that until that point, he had partial hearing in his right ear.  "It was lonely, socially isolating," he says.  "I had few friends and no self-confidence.  It was like a nightmare." 
Since then, though, life for Wouter has become progressively better.  Socially, he feels more supported at the university because most of his friends are deaf or hard of hearing.  He participates in the only deaf theater in the Netherlands, and is actively involved in the deaf community.  Yet, even though he received his Bachelor's degree and is now working toward his Master's, Wouter still feels that the burden borne by him and others with disabilities is far greater than the average student. 
"The inability to hear in itself is not such a big deal.  But the fact that I have to arrange my own interpreters, make appointments, talk to teachers and instruct them on how to deal with hearing impaired students, request additional interpreting hours, it's all very exhausting."  Despite the University of Amsterdam’s efforts in providing resources and personnel like Claudia Fluggen to students with special needs, it's not enough, he says. 
"My university does not do that much for me," he says.  "I think the University of Amsterdam should have a standard policy for instructing teachers on how to teach hearing impaired people, to provide materials for interpretors instantly, and give them access to the same things as me."  Financially, the government, university, and other organizations provide services to people like Wouter, but hidden costs do exist.  He regularly asks his interpreters to buy textbooks so they can understand how to interpret the material prior to each lecture, for example.  And although theoretically he could work a part-time job for extra money, there simply isn't enough time.  "My hearing classmates can go out every night, have a normal social life and so on," he says.  But because of all the work he puts into preparing interpreters for lectures and focusing on the material, it's not possible.  "It's double work for me." 
The classroom environment proves even more challenging.  Like others who have lost their hearing midway through life, Wouter uses a bimodal communication system that combines signing, lip reading, and limited hearing with the assistance of special devices to understand each lecture.  "I'm often tired after class because I have to work very hard to be able to follow everything.  After focusing for three hours with only a 15 minute break, trust me, it's exhausting." 
An average hearing person might expect that the most difficult situations would be everyday occurances, such as riding the morning tram or ordering a meal at a restaurant.  But those tasks are certainly easier than the administrative burden Wouter feels when exercising his "rights" as a disabled person. 
"The government pays my interpreters for all their work, but I have to ask for the hours every year."  In addition, each year Wouter receives 30 hours of private interpreting, and he can always ask for more.  "But in doing so, you have to go through the administrative motions:  fill out the forms, prove that you're deaf, ask, wait and so on.  It's something we've had enough of," he says.  
"The society and government do not pay enough attention to the people with disabilities," he explains.  "For some countries, the rights afforded to people in the Netherlands would be an improvement."  Indeed, in the developing world, living with a disability can be devastating.  The United Nations estimates that ten per cent of the world's population have a disability, yet more than four out of five live in developing countries.  In many of these nations, governments often are not equipped with the resources to provide clean water or sanitation, let alone services for disabled people. 
"But for me, I don't look at my rights from the point of view of other countries.  I look at what I think we the 'disabled and not-normal people' have a right to, and I feel that we do not get what we have a right to."  He points to employment as a striking example of the inequities that people with disabilities face.   For instance, the government pays for fifteen per cent of interpreting services used during work hours.  This applies to all people regardless of work type.  "Even when you are a teacher, and you teach too many hours with an interpreter, they won't pay for the services," he says.  "How can deaf people ever do the work they want, develop themselves, and make careers with that limitation?" 
Wouter's message is clear.  People living with disabilities in the Netherlands receive some support and services, but the community is not being heard.  "They don't listen to our needs as deaf and hard of hearing people," he says.  Young government officials with limited, if any, knowledge of deaf issues shape policy for a marginalized community, he says.  "We aren't treated equally, and I sometimes feel unrespected and unwanted in this society."  

“Anything is Possible”

A few weeks ago, Gijs Bruggeman attended a breakfast with government officials, top company executives, and community leaders.  His goal was to provide another perspective, in having attending an American university, and to help apply some of those same standards in the Netherlands. 
"They were very surprised," he tells us.  "Holland is very focused on Holland.  We rarely, if ever, look at other countries." Because of his experience in the U.S., he often educates others in the hearing and seeing community on the changes that need to take place here. 
The past decade or so has ushered in some significant changes, Gijs says.  Only a few sign language interpreters were employed during the time he attended school.  Now, students like Bram and Wouter have better access to services, accomodations, and funding, although much work still remains.  At the SWDA, for example, Gijs works to develop empowerment courses for deafblind people.  "If we want to see something change, we have to do it ourselves," he says.  "That's why empowering our community is so important." 
Judging from our meetings with both university students and staff, the tone of conversation must shift.  "The Convention on the Rights of Persons with Disabilities is strongly based on the belief that equality for people with disabilities depends on empowerment, access to opportunity and a move away from a welfare model to a goal of participation and inclusion," the Blind Citizens of Australia's organizational web site reads, referring to the landmark United Nations convention held in 2006.  Despite this, Dutch universities continue to fit the mold of "service-providers".  They must become more inclusive of their own communities, working to increase participation among current students with disabilities, and just as importantly, potential students not yet served. 
The challenges of university education reflected in the experiences of Gijs, Bram and Wouter are acutely different  from one another.  Nonetheless, in all of these cases, obstacles remain that should be addressed by legal, political, and educational institutions alike.  One thing for sure, though, is that people living with special needs have the ability to succeed. 
"If you want something badly enough, anything is possible," Gijs grins.  For a man who taught himself how to read Dutch without sound and with limited eyesight, and subsequently learned Dutch Sign Language, American Sign Language, and English, he personifies this quote.  Certainly, others from any background deemed disadvantaged or challenging can look to Gijs – as well as Bram and Wouter – as a source of inspiration, encouragement, and personal empowerment. 

References

 

Websites

Convention on the Rights of Persons with Disabilities.  Accessed June 24, 2009:  http://www.un.org/disabilities/convention/facts.shtml 

 

Blind Citizens Australia.  "UN Disability Rights." Accessed June 24, 2009:  http://www.bca.org.au/natpol/un/CRPD-BCA-web-Art-08.11.07.htm

Articles 

"OECD Urges Review of Ways of Helping Students With Special Needs." http://translate.google.com/translate?js=n&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.minocw.nl%2F&sl=nl&tl=en&history_state0=  Paris, France.  November 20, 2003. 

Disability Votes Count.  “Adam Kosa: First Deaf Person Elected as Member of European Parliament.”  June 8, 2009.  Accessed June 30, 2009:  http://www.disabilityvotescount.eu/en/news/2009/06/adam-kosa-first-deaf-person-elected-as-a-member-of-european-parliament

Interviews

Personal Interview.  Bruggeman, Gijs.  Amsterdam, Netherlands.  June 29, 2009. 

 

Personal Interview.  Touwen, Marjolein.  Amsterdam, Netherlands.  June 29, 2009. 

 

Personal Interview.  Fluggen, Claudia.  Amsterdam, Netherlands.  June 30, 2009. 

 

Personal Interview.  Shultinge, Bram.  Via The Internet (Skype).  June 24, 2009.  

 

E-Mail Communication.  Bolier, Wouter.  Amsterdam, Netherlands.  June 30, 2009. 

Other

Group Presentation.  Bruggeman, Gijs.  Amsterdam, Netherlands.  June 18, 2009. 

 

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Netherlands Netherlands 2009

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