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2016 WBU-ICEVI Joint GA, August 23rd 2016.
Presentation - Concurrent Session 15: Technology for persons with visual impairment and additional disabilities, and/or deafblindness

Topic 2: Personal perspectives on using technology.

By Geir Jensen, Norway, President WFDB.

Introduction

I have been given the honor of holding a presentation at this conference. The topic for my presentation is my “Personal perspectives for use of technology”, assistive technology for persons with deafblindness.

My opinion and position regarding this topic is based on my own personal experiences through many years, from childhood until this very day, as well as my observations both in my own country, and when visiting persons with deafblindness in other countries around the world.

But before I get too deep into the topic, who am I?

As you already may know, my name is Geir Jensen, 73 years old and President of the WFDB.

My professional career, as an advocate for the rights of persons with deafblindness started when I was elected President, and appointed to political spokesperson of the Norwegian Association of the deafblind (FNDB) in 1995.

I am still the President of the FNDB and political spokesperson. I addition to these roles, I have in the recent years also been elected to a number of international positions: General Secretary of the EDbU, 2008 to 2013; General Secretary of the WFDB, 2009 to 2013, and President of the WFDB from 2013.

Since 2012 I have also been a board member of the International Disability Alliance (IDA).

As a volunteer I have also been active, both as a member, and as elected to different positions in the deaf, blind and hard of hearing communities from my youth and until now.

My personal life, as an individual with deafblindness, started at birth.
I was born with the progressive eye condition “Retinitus Pigmentosa” (RP). In addition, I was born with a severe hearing impairment.

Due to the hearing impairment I was considered hard of hearing and was sent to a school for deaf and hard of hearing children. A school accommodated in every way for education in sign language and deaf persons needs, as well as hard of hearing, as these schools were at the time.

It was like that then, with a dual sensory loss, you were either considered deaf, Hard of hearing or blind. And not as an individual with a dual sensory loss. Many still experience this today.

Eventually I became a skilled electrical worker, with a certificate. A trade I kept for 20 years, until my sight impairment made it too difficult to continue working. The welfare authorities tried to put me on disability pension but I chose to learn another profession. A profession I could do even with my reduced vision. So I started studying law at the University of Oslo.
This was in the early -80’s.

It was in this period I had my first real experience with assistive technology, except for hearing aids a few years prior.

By this time I also made a change in my surroundings. I left the sign language society and shifted over to the hard of hearing and blind society, before I eventually became an active advocate for the rights of persons with deafblindness.

At the university, while studying law, I had good use of assistive products. Specifically, products like: Hearing loops, Video magnifier, tape recorder and special telephone so I could communicate directly with teachers, lecturers and Professors when needed; I had an open line.

This was a period of good accommodation and functioning assistive technology.
As a person with deafblindness, with this assistance, I managed to acquire the Cand. Mag.

In 2001 I became totally blind. I tried to learn Braille but it was not so easy to do.

Eventually, in the same period I acquired a hearing impairment of more than 100 decibels; I totally deaf, until I got my CI implants about 7-8 år siden. (Persons with deafblindness in Norway can get CI-Implants on both sides, as opposed to deaf who can only have one, provided by the public).

Without the implants I would have been totally deafblind. With them I have some hearing, but it is at best strongly reduced.

Challenges

A fundamental challenge for people with deafblindness is a lack of full and total recognition of deafblindness as a unique and distinctive disability.

Deafblindness is not a “fixed” state, it is diversified within the scope(scale) of some ability to see and hear in one end, and no ability to see and hear in the other end.
A disability where one impairment enhances the consequences of the other, which in turn puts a higher demand on actions taken to achieve inclusion in society, on all levels; In other words: To enjoy the basic fundamental human rights, equal to the general population.

As technology is becoming an integral part in all our lives, every aspect of it; the society all persons with deafblindness are guaranteed a place in, it is also becoming another challenge, creating a barrier.

Your refrigerator can send you messages when you are low on milk, or maybe even send orders directly to the store based on preset preferences.
For people with disabilities all this new technology offers promises of new assistive products that enhances quality of life, and offers better mobility and inclusion to society.

But, and there is a big but, is this new, innovative and remarkable technology available and accessible for all?

We must all try to avoid the faulty assumption that if an assistive product works for one individual with a certain degree of disability, it will work for all others within the same category regardless. This applies for all disability categories and levels of functioning.

One example here is the various assistive products with synthetic speech adopted for blind. These products work well for the blind, there are many users. However, they are far from helpful for persons with deafblindness. For them either braille (for those able to read that) and/or interpreters will be required.

You could, in a way, ask yourself this question: If you are totally blind, and someone gives you a document with excellent contrast, enlarged letters, and tells you that this is accessible to blind because a person with impaired vision is able to read it.
What would you feel? Would you feel included?
For people with deafblindness this poses as a real challenge.

Another example, also relating to identification of persons with deafblindness in the public space, is the white cane for blind. A well-recognized assistive product for blind, and strongly associated with blind; Blind with hearing.

If used by a person with deafblindness, the environment surrounding the individual would assume this is a blind individual; a hearing blind individual. And interact accordingly, especially in trafficked areas were one could assume that the person with the cane is able to hear cars etc, and not take the proper precautions. Thus creating a hazardous situation.
To help mend this, there are some countries that have adopted the white and red(stripes) cane for people with deafblindness, signaling that this is a deafblind individual that needs special attention due to the dual sensory loss. (For full effect, of course the public needs to be informed and aware of this).
Again, an example of the challenges facing people with deafblindness with regards to assistive products associated with other disabilities. They do not add value but contribute to virtual barriers and even in some cases put people with deafblindness in harms way.
The faulty assumption I am addressing will make assistive technology work as virtual barriers, in contrast to the intention.

When and where this challenge is properly resolved, there is still more challenges, related to the financing. Especially in low income countries, where persons with deafblindness are among the poorest and rarely have access to the necessary funds to acquire assistive products, of any kind, whether it be hearing aid, CI, computer with properly accommodated software or other products to be equally included in their society.

Not to forget the overarching lack of adequate and professional interpreter services. This in total leads to isolation. An isolation rooted in the lack of access to information, communication, education and work.

As with deafblindness, my disability, a dual sensory impairment comprising of both impaired vision and hearing, all disabilities have variations of severity.
As mentioned earlier, you will find persons with deafblindness on a scale from various levels of reduced vision and hearing to totally blind and deaf – Deafblind. On the lighter side of the scale, you might be quite fine, considering your situation, if you are given proper glasses and/or hearing aids. But if you’re on the other end of the scale, these assistive products will not help at all.
Among the different disability categories you also have different levels of communication skills, ability to orientate and move freely and so on.
These levels, or competences if you will, are based on whether or not you have congenital deafblindness, or if it is acquired later in life. It depends on your surroundings and what kind of support you receive and the level of inclusion this support offers.

For these new advancements in assistive technology not to create new barriers, extensive education and training is needed, over time.
This kind of assistance is rarely offered on a consistent level, often it is to fragmented to have any real value and it’s not adapted properly to the users disability, functioning and existing skills.

These facts of life I too often experience personally.
I am deafblind, totally blind and even with my CI-Implants I have very reduced hearing.
Still my surroundings, even the governing body providing assistive products in Norway, make the assumption that I can use microphones, Bluetooth and braille products, since there are some that can. And doing so, with the best of intentions, giving me assistive products that actually excludes me from active participation. My world is still dark and quiet.

These challenges are not only my own experiences; these are definitely common for other persons with deafblindness on a global basis.

My perspectives

So, what is my perspective? What is essential for persons with deafblindness with regards to assistive technology products?

In my opinion assistive technology products are intended to supplement a professional interpreter guide service for persons with deafblindness. For those capable of using assistive products. The overarching objective is to ensure full and total inclusion to all parts of society, and securing the enjoyment of fundamental basic human rights.

This includes (but not limited to) providing access to information, reading of newspapers, bulletin boards, e-mails, letters, television, social interpreting etc.

If the product in question does not provide this for the individual concerned, it is not proper and should not be used, regardless of any other persons practical value from their own use of the product.

There are already many exciting solutions in place, and I know that there are workgroups around the world trying out new solutions; eg the Lormglove in Germany. Solutions that someday may help to bridge the gap between persons with deafblindness and society at large.

There should not be an economic argument for providing assistive products to persons with deafblindness unless it is well documented that the individual in question actual have, or would be able to acquire the needed competence and skill to use it, as well as already have proven a degree of deafblindness necessary to enjoy the benefits of it.

This puts a great demand on those responsible for administrating an distributing these products, and their knowledge of deafblindness and the diversity of it.

Education and training must be available, and adoptable to the user’s needs at all times, continuously.
And, for those living in low (and middle) income countries, especially those in the Global South, it is critical that the respective countries puts in place a financial support system, ensuring not only access to assistive products, but also and even more important, develop a professional interpreter-guide service accessible for all persons with deafblindness in that respective country, regardless of the individuals financial status.

If not all these concerns are handled appropriately, assistive technology will not only be without real value. It will impose new virtual barriers for people with deafblindness, and thus breach the intentions of both the CRPD and the SDGs.

People with deafblindness will find themselves left behind once again.

Conclusion

In light of my presentation today, what is my conclusion on use of technology for people with deafblindness?

As with all humans, regardless of health and functioning, also persons with deafblindness as a group are highly diversified.


Deafblindness as a disability is not a “Black and white” state, it’s a scale. It starts in a “mild” end with a dual sensory loss (hearing and vision impairment) that prevents you from communicating freely with, and orientation yourself in society as well as moving freely around with ordinary assistive products. And ends in as state of total deafblindness, where you can neither see nor hear anything.

The best, and only assistive solution covering the whole scale of deafblindness, is a professional and publicly funded interpreter-guide service, with certified professionals serving as interpreter-guides for persons with deafblindness.