In a small way I probably do, but when it really comes down to it, no, I don't.

The nearest I ever get to know how it feels, I believe, is when I attempt to communicating in a foreign language I am not fluent in, such as Spanish -

- intense concentration & struggling to comprehend is probably what receptive aphasia feels like; and my search for words & syntax is maybe that of expressive aphasia. Sounds familiar?!

The effort to communicate in a badly spoken / poorly understood language can be very tiring, and it takes all the fun out of the exchange.

Of course, I rarely laugh about jokes in spanish as most of the time I don't get them! (Many aphasic people I know have lost the ability
to understand jokes).

Whenever Jenny "rattles away" with her family and friends in her mother tongue (Spanish), and my brain has had enough of verbal abuse, I just switch off.. sounds familiar?!

We shouldn't ask, what does a person need to know or be able to do in order to fit into the existing social order?

Instead, we should ask, what lives in each human being and what can be developed in that person? (Rudolf Steiner).

I come across aphasia barriers on a regular basis and I am always deeply moved by the struggle, frustration and isolation these barriers cause people living with aphasia.

What barriers? Not enough intensive speech therapy? Lack of emotional support? Health care professionals struggling with the concept of dignity and respect? Lack of access to employment? Or is it we can't afford concern for a fellow human being?

It is more likely, the actual barrier that makes life exceedingly difficult for people with aphasia, is in the lack of awareness in society.

"Absence of conscience" has to be overcome: the way in which we see the aphasic person is all-important.

Society's reaction to disabled people in general, is the real reflection of the state it is in: in a society of justice and equality the concern for thy neighbour is paramount, thus allowing that person to be himself / herself.

However, as long as discussions centre on aphasic people needing state benefits, thus drawing on NHS resources, and aphasic people "giving little in return", the barriers will remain.

In a society obsessed with instant communication and measuring everything in performance terms, down grading is the obvious result.

This leads to exclusion, and leaves the person with aphasia fit only for charitable support, and at the mercy of the voluntary sector.

Society will bring about change for disabled people only when humanity enters into the conscience.

Throughout the years of my aphasia experience I had help from many people. Their friendship, sensitivity and empathy, was like a shining light in the darkness.

To mention just a few from the early days -

Guido & Gunilla from Toronto, best friends from years ago when we first met in Sweden.

Malcolm, at Wakefield Hospital OT department for outpatients.

Michael Barnell, the anthroposophical art therapist from Shrewsbury, and all the helpful staff at Pennine Camphill Community (read Jenny' story for more..)

Maureen, Jenny's wonderful mentor, a former Spanish teacher from Liverpool.

Sue Gossedge, Pianist from Ackworth, who helped Jenny "find her voice" again through singing.

The Dysphasia support group in Leeds

Ursula Browning, a curative Eurythmist,

and both our families who have been with us every step of our journey in mind and spirit.

And then there was the health care staff at Park Attwood Clinic, who proved that humanity, dignity, respect and empathy can and do exist in patient care, and the importance of these qualities in the healing process.


Jenny's patience with me in general, and my poor conversational skills in particular, her gentleness, perseverance and her unwavering faith have helped us both find new life in the face of aphasia.

Through Aphasia-Now we want to bring hope and opportunity to people afflicted by aphasia.